The CFRI CF Community Voices Podcast https://cfri.podbean.com CFRI's CF Community Voices is a video podcast series created by and for the cystic fibrosis community. Wed, 04 Mar 2026 11:41:59 -0800 https://podbean.com/?v=5.5 en Copyright 2017 . All rights reserved. Health & Fitness 1440 No false https://pbcdn1.podbean.com/imglogo/image-logo/1553666/CF_community_Voices_new_logo_202165g59.jpg The CFRI CF Community Voices Podcast https://cfri.podbean.com 144 144 Cystic Fibrosis Diversity, Equity and Inclusion (Video) Cystic Fibrosis Diversity, Equity and Inclusion (Video) https://cfri.podbean.com/e/cystic-fibrosis-diversity-equity-and-inclusion/ https://cfri.podbean.com/e/cystic-fibrosis-diversity-equity-and-inclusion/#comments Wed, 04 Mar 2026 11:41:59 -0800 cfri.podbean.com/5a19cbbe-b53d-33f1-8df8-7728c75748bd Cystic fibrosis (CF) is the most common fatal genetic disease in the United States. CF impacts people of every race and ethnicity, yet outdated information and inadequate newborn screening programs perpetuate the misconception that CF only impacts people of European descent. CFRI remains steadfast in our commitment to spotlighting and supporting the needs of every person with CF—ensuring that timely diagnoses, supportive care, developing therapies, useful resources, and opportunities for connection are made accessible for all. For more information about CFRI's diversity and inclusion program, visit www.cfri.org/diversity-and-inclusion.

This film was made possible through educational grants provided by Viatris and Genentech.

]]> Cystic fibrosis (CF) is the most common fatal genetic disease in the United States. CF impacts people of every race and ethnicity, yet outdated information and inadequate newborn screening programs perpetuate the misconception that CF only impacts people of European descent. CFRI remains steadfast in our commitment to spotlighting and supporting the needs of every person with CF—ensuring that timely diagnoses, supportive care, developing therapies, useful resources, and opportunities for connection are made accessible for all. For more information about CFRI's diversity and inclusion program, visit www.cfri.org/diversity-and-inclusion.

This film was made possible through educational grants provided by Viatris and Genentech.

]]> false No 140 514 full I Almost Skipped a Routine Colonoscopy and It Nearly Cost Me Everything — Jennifer Kyle (Video) I Almost Skipped a Routine Colonoscopy and It Nearly Cost Me Everything — Jennifer Kyle (Video) https://cfri.podbean.com/e/i-almost-skipped-a-routine-colonoscopy-and-it-nearly-cost-me-everything-%e2%80%94-jennifer-kyle-video/ https://cfri.podbean.com/e/i-almost-skipped-a-routine-colonoscopy-and-it-nearly-cost-me-everything-%e2%80%94-jennifer-kyle-video/#comments Mon, 02 Mar 2026 09:08:40 -0800 cfri.podbean.com/cad057f1-8649-3e0d-8517-610aa7452100 March is colorectal cancer awareness month—a time to spotlight the increased risk people with CF and CF carriers face when it comes to developing colon cancer. In this podcast, Jennifer Kyle, an adult with CF, shares the moment she learned that malignant polyps had been found in her colon after finally undergoing a routine screening. Urging others to speak with their care teams and get screened early, Jennifer highlights that colonoscopies aren't just boxes to check on a list but are life-saving diagnostic tools. For more information about CF and colon cancer, visit https://curecf.cfri.org/3rkzjuxn.

Click here to donate to CFRI and support the cystic fibrosis community worldwide: https://cfri.app.neoncrm.com/forms/donation

Your thoughts are valuable to us and will help with future podcast planning! Respond to our short survey https://www.surveymonkey.com/r/MPYLX9F, and you’ll be entered in our quarterly drawing for a $25 Etsy gift card. Winners notified by email.

Funding for CF Community Voices 2026 has been provided to date by Viatris and Vertex Pharmaceuticals.

]]> March is colorectal cancer awareness month—a time to spotlight the increased risk people with CF and CF carriers face when it comes to developing colon cancer. In this podcast, Jennifer Kyle, an adult with CF, shares the moment she learned that malignant polyps had been found in her colon after finally undergoing a routine screening. Urging others to speak with their care teams and get screened early, Jennifer highlights that colonoscopies aren't just boxes to check on a list but are life-saving diagnostic tools. For more information about CF and colon cancer, visit https://curecf.cfri.org/3rkzjuxn.

Click here to donate to CFRI and support the cystic fibrosis community worldwide: https://cfri.app.neoncrm.com/forms/donation

Your thoughts are valuable to us and will help with future podcast planning! Respond to our short survey https://www.surveymonkey.com/r/MPYLX9F, and you’ll be entered in our quarterly drawing for a $25 Etsy gift card. Winners notified by email.

Funding for CF Community Voices 2026 has been provided to date by Viatris and Vertex Pharmaceuticals.

]]> false No 518 512 full I Almost Skipped a Routine Colonoscopy and It Nearly Cost Me Everything — Jennifer Kyle (Audio) I Almost Skipped a Routine Colonoscopy and It Nearly Cost Me Everything — Jennifer Kyle (Audio) https://cfri.podbean.com/e/i-almost-skipped-a-routine-colonoscopy-and-it-nearly-cost-me-everything-%e2%80%94-jennifer-kyle-audio/ https://cfri.podbean.com/e/i-almost-skipped-a-routine-colonoscopy-and-it-nearly-cost-me-everything-%e2%80%94-jennifer-kyle-audio/#comments Mon, 02 Mar 2026 09:08:27 -0800 cfri.podbean.com/e850471a-c76a-3be0-8379-6a9842d22ec3 March is colorectal cancer awareness month—a time to spotlight the increased risk people with CF and CF carriers face when it comes to developing colon cancer. In this podcast, Jennifer Kyle, an adult with CF, shares the moment she learned that malignant polyps had been found in her colon after finally undergoing a routine screening. Urging others to speak with their care teams and get screened early, Jennifer highlights that colonoscopies aren't just boxes to check on a list but are life-saving diagnostic tools. For more information about CF and colon cancer, visit https://curecf.cfri.org/3rkzjuxn.

Click here to donate to CFRI and support the cystic fibrosis community worldwide: https://cfri.app.neoncrm.com/forms/donation

Your thoughts are valuable to us and will help with future podcast planning! Respond to our short survey https://www.surveymonkey.com/r/MPYLX9F, and you’ll be entered in our quarterly drawing for a $25 Etsy gift card. Winners notified by email.

Funding for CF Community Voices 2026 has been provided to date by Viatris and Vertex Pharmaceuticals.

]]> March is colorectal cancer awareness month—a time to spotlight the increased risk people with CF and CF carriers face when it comes to developing colon cancer. In this podcast, Jennifer Kyle, an adult with CF, shares the moment she learned that malignant polyps had been found in her colon after finally undergoing a routine screening. Urging others to speak with their care teams and get screened early, Jennifer highlights that colonoscopies aren't just boxes to check on a list but are life-saving diagnostic tools. For more information about CF and colon cancer, visit https://curecf.cfri.org/3rkzjuxn.

Click here to donate to CFRI and support the cystic fibrosis community worldwide: https://cfri.app.neoncrm.com/forms/donation

Your thoughts are valuable to us and will help with future podcast planning! Respond to our short survey https://www.surveymonkey.com/r/MPYLX9F, and you’ll be entered in our quarterly drawing for a $25 Etsy gift card. Winners notified by email.

Funding for CF Community Voices 2026 has been provided to date by Viatris and Vertex Pharmaceuticals.

]]> false No 518 513 full Colon Cancer Screening in People With Cystic Fibrosis — Gretchen Goble, MD (Audio) Colon Cancer Screening in People With Cystic Fibrosis — Gretchen Goble, MD (Audio) https://cfri.podbean.com/e/colon-cancer-screening-in-people-with-cystic-fibrosis-%e2%80%94-gretchen-goble-md-1772218663/ https://cfri.podbean.com/e/colon-cancer-screening-in-people-with-cystic-fibrosis-%e2%80%94-gretchen-goble-md-1772218663/#comments Mon, 02 Mar 2026 09:08:03 -0800 cfri.podbean.com/a8aa22de-7238-3985-a60e-8db6aa23225a People with cystic fibrosis face a significantly increased risk of developing colon cancer. Research shows that people with CF may develop colon cancer 20-30 years earlier than the general population and are 5-10 times more likely to be diagnosed. For those who have undergone a solid organ transplant, the risk dramatically rises up to 25-30 times higher. In this podcast, Gretchen Goble, MD, outlines why people with cystic fibrosis are at an increased risk, what early warning signs to look out for, and the latest screening recommendations designed specifically for the CF community. If you are an adult with CF, and have not discussed colon cancer screening with your care team, this conversation could be an important next step. For more information about CF and colon cancer, visit https://curecf.cfri.org/3rkzjuxn.

Dr. Goble is a CFRI 2025 Patrick Nash Fellow, studying the increased presence of comorbidities—such as colon cancer—among people with CF as they age. For more information about CFRI's Patrick Nash Fellows Training Program, visit https://curecf.cfri.org/2p99nuym.

Click here to donate to CFRI and support the cystic fibrosis community worldwide: https://cfri.app.neoncrm.com/forms/donation 

Your thoughts are valuable to us and will help with future podcast planning! Respond to our short survey https://www.surveymonkey.com/r/MPYLX9F, and you’ll be entered in our quarterly drawing for a $25 Etsy gift card. Winners notified by email.

Funding for CF Community Voices 2026 has been provided to date by Viatris and Vertex Pharmaceuticals.

]]> People with cystic fibrosis face a significantly increased risk of developing colon cancer. Research shows that people with CF may develop colon cancer 20-30 years earlier than the general population and are 5-10 times more likely to be diagnosed. For those who have undergone a solid organ transplant, the risk dramatically rises up to 25-30 times higher. In this podcast, Gretchen Goble, MD, outlines why people with cystic fibrosis are at an increased risk, what early warning signs to look out for, and the latest screening recommendations designed specifically for the CF community. If you are an adult with CF, and have not discussed colon cancer screening with your care team, this conversation could be an important next step. For more information about CF and colon cancer, visit https://curecf.cfri.org/3rkzjuxn.

Dr. Goble is a CFRI 2025 Patrick Nash Fellow, studying the increased presence of comorbidities—such as colon cancer—among people with CF as they age. For more information about CFRI's Patrick Nash Fellows Training Program, visit https://curecf.cfri.org/2p99nuym.

Click here to donate to CFRI and support the cystic fibrosis community worldwide: https://cfri.app.neoncrm.com/forms/donation 

Your thoughts are valuable to us and will help with future podcast planning! Respond to our short survey https://www.surveymonkey.com/r/MPYLX9F, and you’ll be entered in our quarterly drawing for a $25 Etsy gift card. Winners notified by email.

Funding for CF Community Voices 2026 has been provided to date by Viatris and Vertex Pharmaceuticals.

]]> false No 1006 511 full Colon Cancer Screening in People With Cystic Fibrosis — Gretchen Goble, MD (Video) Colon Cancer Screening in People With Cystic Fibrosis — Gretchen Goble, MD (Video) https://cfri.podbean.com/e/colon-cancer-screening-in-people-with-cystic-fibrosis-%e2%80%94-gretchen-goble-md/ https://cfri.podbean.com/e/colon-cancer-screening-in-people-with-cystic-fibrosis-%e2%80%94-gretchen-goble-md/#comments Mon, 02 Mar 2026 09:07:53 -0800 cfri.podbean.com/8fe5c251-57db-3d64-b2bd-52a6e0b8cdc7 People with cystic fibrosis face a significantly increased risk of developing colon cancer. Research shows that people with CF may develop colon cancer 20-30 years earlier than the general population and are 5-10 times more likely to be diagnosed. For those who have undergone a solid organ transplant, the risk dramatically rises up to 25-30 times higher. In this podcast, Gretchen Goble, MD, outlines why people with cystic fibrosis are at an increased risk, what early warning signs to look out for, and the latest screening recommendations designed specifically for the CF community. If you are an adult with CF, and have not discussed colon cancer screening with your care team, this conversation could be an important next step. For more information about CF and colon cancer, visit https://curecf.cfri.org/3rkzjuxn.

Dr. Goble is a CFRI 2025 Patrick Nash Fellow, studying the increased presence of comorbidities—such as colon cancer—among people with CF as they age. For more information about CFRI's Patrick Nash Fellows Training Program, visit https://curecf.cfri.org/2p99nuym.

Click here to donate to CFRI and support the cystic fibrosis community worldwide: https://cfri.app.neoncrm.com/forms/donation Your thoughts are valuable to us and will help with future podcast planning! Respond to our short survey https://www.surveymonkey.com/r/MPYLX9F, and you’ll be entered in our quarterly drawing for a $25 Etsy gift card. Winners notified by email.

Funding for CF Community Voices 2026 has been provided to date by Viatris and Vertex Pharmaceuticals.

]]> People with cystic fibrosis face a significantly increased risk of developing colon cancer. Research shows that people with CF may develop colon cancer 20-30 years earlier than the general population and are 5-10 times more likely to be diagnosed. For those who have undergone a solid organ transplant, the risk dramatically rises up to 25-30 times higher. In this podcast, Gretchen Goble, MD, outlines why people with cystic fibrosis are at an increased risk, what early warning signs to look out for, and the latest screening recommendations designed specifically for the CF community. If you are an adult with CF, and have not discussed colon cancer screening with your care team, this conversation could be an important next step. For more information about CF and colon cancer, visit https://curecf.cfri.org/3rkzjuxn.

Dr. Goble is a CFRI 2025 Patrick Nash Fellow, studying the increased presence of comorbidities—such as colon cancer—among people with CF as they age. For more information about CFRI's Patrick Nash Fellows Training Program, visit https://curecf.cfri.org/2p99nuym.

Click here to donate to CFRI and support the cystic fibrosis community worldwide: https://cfri.app.neoncrm.com/forms/donation Your thoughts are valuable to us and will help with future podcast planning! Respond to our short survey https://www.surveymonkey.com/r/MPYLX9F, and you’ll be entered in our quarterly drawing for a $25 Etsy gift card. Winners notified by email.

Funding for CF Community Voices 2026 has been provided to date by Viatris and Vertex Pharmaceuticals.

]]> false No 1006 510 full IEP & 504 Plans for Students with Cystic Fibrosis — Hannah Pfeiffer, M.Ed. & Rachel Alder (Audio) IEP & 504 Plans for Students with Cystic Fibrosis — Hannah Pfeiffer, M.Ed. & Rachel Alder (Audio) https://cfri.podbean.com/e/iep-504-plans-for-students-with-cystic-fibrosis-%e2%80%94-hannah-pfeiffer-med-rachel-alder-audio/ https://cfri.podbean.com/e/iep-504-plans-for-students-with-cystic-fibrosis-%e2%80%94-hannah-pfeiffer-med-rachel-alder-audio/#comments Wed, 04 Feb 2026 09:18:43 -0800 cfri.podbean.com/0708c0ec-45fd-3fef-90eb-bb1255cd6903 Students with cystic fibrosis may require accommodations on account of their disease or another disability in order to reach their full academic potential. In this podcast, Hannah Pfeiffer, M.Ed. and Rachel Alder, adults with CF, explain the difference between an Individual Education Program (IEP) and 504 Plan. Hannah and Rachel detail how to speak with one's medical team and school to determine which support program is appropriate, and provide example accommodations that may specifically help people with CF.

Click here to donate to CFRI and support the cystic fibrosis community worldwide: https://cfri.app.neoncrm.com/forms/donation

Your thoughts are valuable to us and will help with future podcast planning! Respond to our short survey https://www.surveymonkey.com/r/MPYLX9F, and you’ll be entered in our quarterly drawing for a $25 Etsy gift card. Winners notified by email.

Funding for CF Community Voices 2026 has been provided to date by Viatris.

]]> Students with cystic fibrosis may require accommodations on account of their disease or another disability in order to reach their full academic potential. In this podcast, Hannah Pfeiffer, M.Ed. and Rachel Alder, adults with CF, explain the difference between an Individual Education Program (IEP) and 504 Plan. Hannah and Rachel detail how to speak with one's medical team and school to determine which support program is appropriate, and provide example accommodations that may specifically help people with CF.

Click here to donate to CFRI and support the cystic fibrosis community worldwide: https://cfri.app.neoncrm.com/forms/donation

Your thoughts are valuable to us and will help with future podcast planning! Respond to our short survey https://www.surveymonkey.com/r/MPYLX9F, and you’ll be entered in our quarterly drawing for a $25 Etsy gift card. Winners notified by email.

Funding for CF Community Voices 2026 has been provided to date by Viatris.

]]> false No 876 508 full IEP & 504 Plans for Students with Cystic Fibrosis — Hannah Pfeiffer, M.Ed. & Rachel Alder (Video) IEP & 504 Plans for Students with Cystic Fibrosis — Hannah Pfeiffer, M.Ed. & Rachel Alder (Video) https://cfri.podbean.com/e/iep-504-plans-for-students-with-cystic-fibrosis-%e2%80%94-hannah-pfeiffer-med-rachel-alder-video/ https://cfri.podbean.com/e/iep-504-plans-for-students-with-cystic-fibrosis-%e2%80%94-hannah-pfeiffer-med-rachel-alder-video/#comments Wed, 04 Feb 2026 09:18:36 -0800 cfri.podbean.com/0216f716-b6c4-3d02-8042-8bfeee49ec8d Students with cystic fibrosis may require accommodations on account of their disease or another disability in order to reach their full academic potential. In this podcast, Hannah Pfeiffer, M.Ed. and Rachel Alder, adults with CF, explain the difference between an Individual Education Program (IEP) and 504 Plan. Hannah and Rachel detail how to speak with one's medical team and school to determine which support program is appropriate, and provide example accommodations that may specifically help people with CF.

Click here to donate to CFRI and support the cystic fibrosis community worldwide: https://cfri.app.neoncrm.com/forms/donation

Your thoughts are valuable to us and will help with future podcast planning! Respond to our short survey https://www.surveymonkey.com/r/MPYLX9F, and you’ll be entered in our quarterly drawing for a $25 Etsy gift card. Winners notified by email.

Funding for CF Community Voices 2026 has been provided to date by Viatris.

]]> Students with cystic fibrosis may require accommodations on account of their disease or another disability in order to reach their full academic potential. In this podcast, Hannah Pfeiffer, M.Ed. and Rachel Alder, adults with CF, explain the difference between an Individual Education Program (IEP) and 504 Plan. Hannah and Rachel detail how to speak with one's medical team and school to determine which support program is appropriate, and provide example accommodations that may specifically help people with CF.

Click here to donate to CFRI and support the cystic fibrosis community worldwide: https://cfri.app.neoncrm.com/forms/donation

Your thoughts are valuable to us and will help with future podcast planning! Respond to our short survey https://www.surveymonkey.com/r/MPYLX9F, and you’ll be entered in our quarterly drawing for a $25 Etsy gift card. Winners notified by email.

Funding for CF Community Voices 2026 has been provided to date by Viatris.

]]> false No 876 509 full Human Papillomavirus and Cervical Cancer in People with Cystic Fibrosis — Christina Thornton, MD (Video) Human Papillomavirus and Cervical Cancer in People with Cystic Fibrosis — Christina Thornton, MD (Video) https://cfri.podbean.com/e/human-papillomavirus-and-cervical-cancer-in-people-with-cystic-fibrosis-%e2%80%94-christina-thornton-md-video/ https://cfri.podbean.com/e/human-papillomavirus-and-cervical-cancer-in-people-with-cystic-fibrosis-%e2%80%94-christina-thornton-md-video/#comments Wed, 07 Jan 2026 09:09:18 -0800 cfri.podbean.com/ddfb73c6-36b2-33db-8239-0eedbb72d402 January is Cervical Cancer Awareness Month! Females with cystic fibrosis—especially those who have received a transplant—face an elevated risk of abnormal Pap smears. This increased risk is often related to human papillomavirus (HPV) infection or cervical dysplasia, which can progress to cervical cancer. In this podcast, Christina Thornton, MD, PhD, FRCPC, discusses risk factors among people with CF for developing HPV and cervical cancer, such as low vaccination rates and the presence of immunosuppressant drugs, recent research studies, and strategies to prevent and diagnose these conditions early. If you have not yet spoken with your CF care team about this elevated risk, consider raising this important topic.

Click here to donate to CFRI and support the cystic fibrosis community worldwide: https://cfri.app.neoncrm.com/forms/donation

Your thoughts are valuable to us and will help with future podcast planning! Respond to our short survey https://www.surveymonkey.com/r/MPYLX9F, and you’ll be entered in our quarterly drawing for a $25 Etsy gift card. Winners notified by email.

]]> January is Cervical Cancer Awareness Month! Females with cystic fibrosis—especially those who have received a transplant—face an elevated risk of abnormal Pap smears. This increased risk is often related to human papillomavirus (HPV) infection or cervical dysplasia, which can progress to cervical cancer. In this podcast, Christina Thornton, MD, PhD, FRCPC, discusses risk factors among people with CF for developing HPV and cervical cancer, such as low vaccination rates and the presence of immunosuppressant drugs, recent research studies, and strategies to prevent and diagnose these conditions early. If you have not yet spoken with your CF care team about this elevated risk, consider raising this important topic.

Click here to donate to CFRI and support the cystic fibrosis community worldwide: https://cfri.app.neoncrm.com/forms/donation

Your thoughts are valuable to us and will help with future podcast planning! Respond to our short survey https://www.surveymonkey.com/r/MPYLX9F, and you’ll be entered in our quarterly drawing for a $25 Etsy gift card. Winners notified by email.

]]> false No 1454 506 full Human Papillomavirus and Cervical Cancer in People with Cystic Fibrosis — Christina Thornton, MD (Audio) Human Papillomavirus and Cervical Cancer in People with Cystic Fibrosis — Christina Thornton, MD (Audio) https://cfri.podbean.com/e/human-papillomavirus-and-cervical-cancer-in-people-with-cystic-fibrosis-%e2%80%94-christina-thornton-md-audio/ https://cfri.podbean.com/e/human-papillomavirus-and-cervical-cancer-in-people-with-cystic-fibrosis-%e2%80%94-christina-thornton-md-audio/#comments Wed, 07 Jan 2026 09:09:05 -0800 cfri.podbean.com/f184f7a2-1298-349c-9a7e-56c16da0acf8 January is Cervical Cancer Awareness Month! Females with cystic fibrosis—especially those who have received a transplant—face an elevated risk of abnormal Pap smears. This increased risk is often related to human papillomavirus (HPV) infection or cervical dysplasia, which can progress to cervical cancer. In this podcast, Christina Thornton, MD, PhD, FRCPC, discusses risk factors among people with CF for developing HPV and cervical cancer, such as low vaccination rates and the presence of immunosuppressant drugs, recent research studies, and strategies to prevent and diagnose these conditions early. If you have not yet spoken with your CF care team about this elevated risk, consider raising this important topic.

Click here to donate to CFRI and support the cystic fibrosis community worldwide: https://cfri.app.neoncrm.com/forms/donation

Your thoughts are valuable to us and will help with future podcast planning! Respond to our short survey https://www.surveymonkey.com/r/MPYLX9F, and you’ll be entered in our quarterly drawing for a $25 Etsy gift card. Winners notified by email.

]]> January is Cervical Cancer Awareness Month! Females with cystic fibrosis—especially those who have received a transplant—face an elevated risk of abnormal Pap smears. This increased risk is often related to human papillomavirus (HPV) infection or cervical dysplasia, which can progress to cervical cancer. In this podcast, Christina Thornton, MD, PhD, FRCPC, discusses risk factors among people with CF for developing HPV and cervical cancer, such as low vaccination rates and the presence of immunosuppressant drugs, recent research studies, and strategies to prevent and diagnose these conditions early. If you have not yet spoken with your CF care team about this elevated risk, consider raising this important topic.

Click here to donate to CFRI and support the cystic fibrosis community worldwide: https://cfri.app.neoncrm.com/forms/donation

Your thoughts are valuable to us and will help with future podcast planning! Respond to our short survey https://www.surveymonkey.com/r/MPYLX9F, and you’ll be entered in our quarterly drawing for a $25 Etsy gift card. Winners notified by email.

]]> false No 1454 507 full Awareness and Advocacy for 50 Years — CFRI Advocacy Film 2026 Awareness and Advocacy for 50 Years — CFRI Advocacy Film 2026 https://cfri.podbean.com/e/2025-advocacy-film/ https://cfri.podbean.com/e/2025-advocacy-film/#comments Tue, 23 Dec 2025 11:44:48 -0800 cfri.podbean.com/01b85b4e-ce0a-374b-b40e-2e07cb0053d0 For 50 years, CFRI has been a partner in living for the cystic fibrosis (CF) community. Through national awareness campaigns, CF research funding, education and support services, and advocacy at the state and national levels, CFRI aims to elevate the needs of our CF community members and find solutions to the challenges faced. Watch CFRI’s 2025 Advocacy & Awareness film here to learn more about how we are making a difference alongside our diverse and resilient community.

Funding for this awareness campaign was provided by Viatris, Genentech, Vertex Pharmaceuticals, Bucks County CF Alliance, and the Partnership to Improve Patient Care.

]]> For 50 years, CFRI has been a partner in living for the cystic fibrosis (CF) community. Through national awareness campaigns, CF research funding, education and support services, and advocacy at the state and national levels, CFRI aims to elevate the needs of our CF community members and find solutions to the challenges faced. Watch CFRI’s 2025 Advocacy & Awareness film here to learn more about how we are making a difference alongside our diverse and resilient community.

Funding for this awareness campaign was provided by Viatris, Genentech, Vertex Pharmaceuticals, Bucks County CF Alliance, and the Partnership to Improve Patient Care.

]]> false No 135 505 full Cystic Fibrosis in the South Asian Community (Audio) Cystic Fibrosis in the South Asian Community (Audio) https://cfri.podbean.com/e/diversity-audio/ https://cfri.podbean.com/e/diversity-audio/#comments Wed, 10 Dec 2025 14:17:10 -0800 cfri.podbean.com/9f5c0494-4db8-32f0-ba9d-379e671802c5 Cystic fibrosis (CF) impacts people of every race and ethnicity, including members of the South Asian community. Due to the common misperception of CF as a disease impacting only those of European descent, many individuals suffer years without a diagnosis and face barriers to accessing emerging treatments. This powerful film highlights the voices of individuals of South Asian descent living with CF as they share their personal journeys and the challenges they have faced.

Your thoughts are valuable to us and will help with future podcast planning! Respond to our short survey https://www.surveymonkey.com/r/MPYLX9F, and you’ll be entered in our quarterly drawing for a $25 Etsy gift card. Winners notified by email.

This film was made possible through educational grants provided by Genetech, AbbVie, Viatris, ReCode, and Gilead Sciences.

]]> Cystic fibrosis (CF) impacts people of every race and ethnicity, including members of the South Asian community. Due to the common misperception of CF as a disease impacting only those of European descent, many individuals suffer years without a diagnosis and face barriers to accessing emerging treatments. This powerful film highlights the voices of individuals of South Asian descent living with CF as they share their personal journeys and the challenges they have faced.

Your thoughts are valuable to us and will help with future podcast planning! Respond to our short survey https://www.surveymonkey.com/r/MPYLX9F, and you’ll be entered in our quarterly drawing for a $25 Etsy gift card. Winners notified by email.

This film was made possible through educational grants provided by Genetech, AbbVie, Viatris, ReCode, and Gilead Sciences.

]]> false No 854 503 full Cystic Fibrosis in the South Asian Community (Video) Cystic Fibrosis in the South Asian Community (Video) https://cfri.podbean.com/e/diversity-video/ https://cfri.podbean.com/e/diversity-video/#comments Wed, 10 Dec 2025 14:17:00 -0800 cfri.podbean.com/5f22b099-6527-3808-a80b-09d27756a4f4 Cystic fibrosis (CF) impacts people of every race and ethnicity, including members of the South Asian community. Due to the common misperception of CF as a disease impacting only those of European descent, many individuals suffer years without a diagnosis and face barriers to accessing emerging treatments. This powerful film highlights the voices of individuals of South Asian descent living with CF as they share their personal journeys and the challenges they have faced.

Your thoughts are valuable to us and will help with future podcast planning! Respond to our short survey https://www.surveymonkey.com/r/MPYLX9F, and you’ll be entered in our quarterly drawing for a $25 Etsy gift card. Winners notified by email.

This film was made possible through educational grants provided by Genetech, AbbVie, Viatris, ReCode, and Gilead Sciences.

]]> Cystic fibrosis (CF) impacts people of every race and ethnicity, including members of the South Asian community. Due to the common misperception of CF as a disease impacting only those of European descent, many individuals suffer years without a diagnosis and face barriers to accessing emerging treatments. This powerful film highlights the voices of individuals of South Asian descent living with CF as they share their personal journeys and the challenges they have faced.

Your thoughts are valuable to us and will help with future podcast planning! Respond to our short survey https://www.surveymonkey.com/r/MPYLX9F, and you’ll be entered in our quarterly drawing for a $25 Etsy gift card. Winners notified by email.

This film was made possible through educational grants provided by Genetech, AbbVie, Viatris, ReCode, and Gilead Sciences.

]]> false No 854 504 full The Changing Landscape of Nutrition for People with Cystic Fibrosis — Kristi Cheng, MPH RD (Audio) The Changing Landscape of Nutrition for People with Cystic Fibrosis — Kristi Cheng, MPH RD (Audio) https://cfri.podbean.com/e/the-changing-landscape-of-nutrition-for-people-with-cystic-fibrosis-%e2%80%94-kristi-cheng-mph-rd-audio/ https://cfri.podbean.com/e/the-changing-landscape-of-nutrition-for-people-with-cystic-fibrosis-%e2%80%94-kristi-cheng-mph-rd-audio/#comments Mon, 10 Nov 2025 12:17:09 -0800 cfri.podbean.com/08ae0f6f-576a-3b3f-8dee-cdf31db92e0a Highly effective modulator therapies and other treatment advancements have significantly improved life expectancy for many people with cystic fibrosis (CF). In this podcast, registered CF dietician Kristi Cheng discusses dietary patterns linked to healthy aging and reduced risks of chronic diseases, such as diabetes, heart disease, and cancer. Cheng explores how the legacy CF diet—otherwise known as the "McDonald's Diet"—can be practically adapted to meet the nutritional needs of a longer-living CF population focused on sustaining health and preventing comorbidities.

Click here to donate to CFRI and support the cystic fibrosis community worldwide: https://cfri.app.neoncrm.com/forms/donation

Your thoughts are valuable to us and will help with future podcast planning! Respond to our short survey https://www.surveymonkey.com/r/MPYLX9F, and you’ll be entered in our quarterly drawing for a $25 Etsy gift card. Winners notified by email.

Funding for CF Community Voices 2025 has been provided to date by Viatris and Vertex Pharmaceuticals.

]]> Highly effective modulator therapies and other treatment advancements have significantly improved life expectancy for many people with cystic fibrosis (CF). In this podcast, registered CF dietician Kristi Cheng discusses dietary patterns linked to healthy aging and reduced risks of chronic diseases, such as diabetes, heart disease, and cancer. Cheng explores how the legacy CF diet—otherwise known as the "McDonald's Diet"—can be practically adapted to meet the nutritional needs of a longer-living CF population focused on sustaining health and preventing comorbidities.

Click here to donate to CFRI and support the cystic fibrosis community worldwide: https://cfri.app.neoncrm.com/forms/donation

Your thoughts are valuable to us and will help with future podcast planning! Respond to our short survey https://www.surveymonkey.com/r/MPYLX9F, and you’ll be entered in our quarterly drawing for a $25 Etsy gift card. Winners notified by email.

Funding for CF Community Voices 2025 has been provided to date by Viatris and Vertex Pharmaceuticals.

]]> false No 991 501 full The Changing Landscape of Nutrition for People with Cystic Fibrosis — Kristi Cheng, MPH RD (Video) The Changing Landscape of Nutrition for People with Cystic Fibrosis — Kristi Cheng, MPH RD (Video) https://cfri.podbean.com/e/the-changing-landscape-of-nutrition-for-people-with-cystic-fibrosis-%e2%80%94-kristi-cheng-mph-rd-video/ https://cfri.podbean.com/e/the-changing-landscape-of-nutrition-for-people-with-cystic-fibrosis-%e2%80%94-kristi-cheng-mph-rd-video/#comments Mon, 10 Nov 2025 12:17:01 -0800 cfri.podbean.com/d6f1aeea-b112-314e-82d0-d87d7d8c570a Highly effective modulator therapies and other treatment advancements have significantly improved life expectancy for many people with cystic fibrosis (CF). In this podcast, registered CF dietician Kristi Cheng discusses dietary patterns linked to healthy aging and reduced risks of chronic diseases, such as diabetes, heart disease, and cancer. Cheng explores how the legacy CF diet—otherwise known as the "McDonald's Diet"—can be practically adapted to meet the nutritional needs of a longer-living CF population focused on sustaining health and preventing comorbidities.

Click here to donate to CFRI and support the cystic fibrosis community worldwide: https://cfri.app.neoncrm.com/forms/donation

Your thoughts are valuable to us and will help with future podcast planning! Respond to our short survey https://www.surveymonkey.com/r/MPYLX9F, and you’ll be entered in our quarterly drawing for a $25 Etsy gift card. Winners notified by email.

Funding for CF Community Voices 2025 has been provided to date by Viatris and Vertex Pharmaceuticals.

]]> Highly effective modulator therapies and other treatment advancements have significantly improved life expectancy for many people with cystic fibrosis (CF). In this podcast, registered CF dietician Kristi Cheng discusses dietary patterns linked to healthy aging and reduced risks of chronic diseases, such as diabetes, heart disease, and cancer. Cheng explores how the legacy CF diet—otherwise known as the "McDonald's Diet"—can be practically adapted to meet the nutritional needs of a longer-living CF population focused on sustaining health and preventing comorbidities.

Click here to donate to CFRI and support the cystic fibrosis community worldwide: https://cfri.app.neoncrm.com/forms/donation

Your thoughts are valuable to us and will help with future podcast planning! Respond to our short survey https://www.surveymonkey.com/r/MPYLX9F, and you’ll be entered in our quarterly drawing for a $25 Etsy gift card. Winners notified by email.

Funding for CF Community Voices 2025 has been provided to date by Viatris and Vertex Pharmaceuticals.

]]> false No 991 502 full Intimate Partner Violence & Cystic Fibrosis — Brooke Jones PhD(c), LCSW & an Adult with CF (Audio) Intimate Partner Violence & Cystic Fibrosis — Brooke Jones PhD(c), LCSW & an Adult with CF (Audio) https://cfri.podbean.com/e/intimate-partner-violence-cystic-fibrosis-%e2%80%94-brooke-jones-phdc-lcsw-an-adult-with-cf-audio/ https://cfri.podbean.com/e/intimate-partner-violence-cystic-fibrosis-%e2%80%94-brooke-jones-phdc-lcsw-an-adult-with-cf-audio/#comments Tue, 28 Oct 2025 09:33:43 -0700 cfri.podbean.com/2074ce14-88d1-3a81-8511-495522186696 In a 2023 study across five US CF centers, 33% of women with cystic fibrosis reported experiencing intimate partner violence (IPV) in their lifetime. This IPV awareness month, CF social worker Brooke Jones, PhD(c), LCSW, and an adult with CF discuss the impact of chronic illness on romantic relationships, the increased risk of IPV among people with CF, and how to access support.

For IPV support, call the national domestic violence hotline at 1(800)-799-7233, or text 'START' to 88788. thehotline.org

Click here to donate to CFRI and support the cystic fibrosis community worldwide: https://cfri.app.neoncrm.com/forms/donation

Your thoughts are valuable to us and will help with future podcast planning! Respond to our short survey https://www.surveymonkey.com/r/MPYLX9F, and you’ll be entered in our quarterly drawing for a $25 Etsy gift card. Winners notified by email.

Funding for CF Community Voices 2025 has been provided to date by Viatris and Vertex Pharmaceuticals.

]]> In a 2023 study across five US CF centers, 33% of women with cystic fibrosis reported experiencing intimate partner violence (IPV) in their lifetime. This IPV awareness month, CF social worker Brooke Jones, PhD(c), LCSW, and an adult with CF discuss the impact of chronic illness on romantic relationships, the increased risk of IPV among people with CF, and how to access support.

For IPV support, call the national domestic violence hotline at 1(800)-799-7233, or text 'START' to 88788. thehotline.org

Click here to donate to CFRI and support the cystic fibrosis community worldwide: https://cfri.app.neoncrm.com/forms/donation

Your thoughts are valuable to us and will help with future podcast planning! Respond to our short survey https://www.surveymonkey.com/r/MPYLX9F, and you’ll be entered in our quarterly drawing for a $25 Etsy gift card. Winners notified by email.

Funding for CF Community Voices 2025 has been provided to date by Viatris and Vertex Pharmaceuticals.

]]> false No 1746 500 full Intimate Partner Violence & Cystic Fibrosis — Brooke Jones PhD(c), LCSW & an Adult with CF (Video) Intimate Partner Violence & Cystic Fibrosis — Brooke Jones PhD(c), LCSW & an Adult with CF (Video) https://cfri.podbean.com/e/intimate-partner-violence-cystic-fibrosis-%e2%80%94-brooke-jones-phdc-lcsw-an-adult-with-cf-1761084472/ https://cfri.podbean.com/e/intimate-partner-violence-cystic-fibrosis-%e2%80%94-brooke-jones-phdc-lcsw-an-adult-with-cf-1761084472/#comments Wed, 22 Oct 2025 09:22:53 -0700 cfri.podbean.com/7584be5a-11bf-3d98-b71e-4637576e5c28 In a 2023 study across five US CF centers, 33% of women with cystic fibrosis reported experiencing intimate partner violence (IPV) in their lifetime. This IPV awareness month, CF social worker Brooke Jones, PhD(c), LCSW, and an adult with CF discuss the impact of chronic illness on romantic relationships, the increased risk of IPV among people with CF, and how to access support.

For IPV support, call the national domestic violence hotline at 1(800)-799-7233, or text 'START' to 88788. thehotline.org

Click here to donate to CFRI and support the cystic fibrosis community worldwide: https://cfri.app.neoncrm.com/forms/donation

Your thoughts are valuable to us and will help with future podcast planning! Respond to our short survey https://www.surveymonkey.com/r/MPYLX9F, and you’ll be entered in our quarterly drawing for a $25 Etsy gift card. Winners notified by email.

Funding for CF Community Voices 2025 has been provided to date by Viatris and Vertex Pharmaceuticals.

]]> In a 2023 study across five US CF centers, 33% of women with cystic fibrosis reported experiencing intimate partner violence (IPV) in their lifetime. This IPV awareness month, CF social worker Brooke Jones, PhD(c), LCSW, and an adult with CF discuss the impact of chronic illness on romantic relationships, the increased risk of IPV among people with CF, and how to access support.

For IPV support, call the national domestic violence hotline at 1(800)-799-7233, or text 'START' to 88788. thehotline.org

Click here to donate to CFRI and support the cystic fibrosis community worldwide: https://cfri.app.neoncrm.com/forms/donation

Your thoughts are valuable to us and will help with future podcast planning! Respond to our short survey https://www.surveymonkey.com/r/MPYLX9F, and you’ll be entered in our quarterly drawing for a $25 Etsy gift card. Winners notified by email.

Funding for CF Community Voices 2025 has been provided to date by Viatris and Vertex Pharmaceuticals.

]]> false No 1746 499 full Vaccines for the Cystic Fibrosis Patient — Richard Moss, MD (Video) Vaccines for the Cystic Fibrosis Patient — Richard Moss, MD (Video) https://cfri.podbean.com/e/vaccines-for-the-cystic-fibrosis-patient-%e2%80%94-richard-moss-md-1759164291/ https://cfri.podbean.com/e/vaccines-for-the-cystic-fibrosis-patient-%e2%80%94-richard-moss-md-1759164291/#comments Wed, 01 Oct 2025 06:18:17 -0700 cfri.podbean.com/bb936ff7-6ca8-3a85-8d6f-46bf5334b7dc People living with cystic fibrosis face unique health challenges, especially when it comes to respiratory infections. In this podcast, Dr. Richard Moss provides data demonstrating which populations are most at risk of adverse health complications post-infection, and explores why vaccines for the flu, COVID-19, and RSV are essential tools for protecting those with CF.

Click here to donate to CFRI and support the cystic fibrosis community worldwide: https://cfri.app.neoncrm.com/forms/donation 

Your thoughts are valuable to us and will help with future podcast planning! Respond to our short survey https://www.surveymonkey.com/r/MPYLX9F, and you’ll be entered in our quarterly drawing for a $25 Etsy gift card. Winners notified by email.

Funding for CF Community Voices 2025 has been provided to date by Viatris and Vertex Pharmaceuticals.

]]> People living with cystic fibrosis face unique health challenges, especially when it comes to respiratory infections. In this podcast, Dr. Richard Moss provides data demonstrating which populations are most at risk of adverse health complications post-infection, and explores why vaccines for the flu, COVID-19, and RSV are essential tools for protecting those with CF.

Click here to donate to CFRI and support the cystic fibrosis community worldwide: https://cfri.app.neoncrm.com/forms/donation 

Your thoughts are valuable to us and will help with future podcast planning! Respond to our short survey https://www.surveymonkey.com/r/MPYLX9F, and you’ll be entered in our quarterly drawing for a $25 Etsy gift card. Winners notified by email.

Funding for CF Community Voices 2025 has been provided to date by Viatris and Vertex Pharmaceuticals.

]]> false No 2873 497 full Vaccines for the Cystic Fibrosis Patient — Richard Moss, MD (Audio) Vaccines for the Cystic Fibrosis Patient — Richard Moss, MD (Audio) https://cfri.podbean.com/e/vaccines-for-the-cystic-fibrosis-patient-%e2%80%94-richard-moss-md/ https://cfri.podbean.com/e/vaccines-for-the-cystic-fibrosis-patient-%e2%80%94-richard-moss-md/#comments Wed, 01 Oct 2025 06:18:06 -0700 cfri.podbean.com/1cd3636b-8f88-3036-88a4-2ad2c7ff10c6 People living with cystic fibrosis face unique health challenges, especially when it comes to respiratory infections. In this podcast, Dr. Richard Moss provides data demonstrating which populations are most at risk of adverse health complications post-infection, and explores why vaccines for the flu, COVID-19, and RSV are essential tools for protecting those with CF.

Click here to donate to CFRI and support the cystic fibrosis community worldwide: https://cfri.app.neoncrm.com/forms/donation 

Your thoughts are valuable to us and will help with future podcast planning! Respond to our short survey https://www.surveymonkey.com/r/MPYLX9F, and you’ll be entered in our quarterly drawing for a $25 Etsy gift card. Winners notified by email.

Funding for CF Community Voices 2025 has been provided to date by Viatris and Vertex Pharmaceuticals.

]]> People living with cystic fibrosis face unique health challenges, especially when it comes to respiratory infections. In this podcast, Dr. Richard Moss provides data demonstrating which populations are most at risk of adverse health complications post-infection, and explores why vaccines for the flu, COVID-19, and RSV are essential tools for protecting those with CF.

Click here to donate to CFRI and support the cystic fibrosis community worldwide: https://cfri.app.neoncrm.com/forms/donation 

Your thoughts are valuable to us and will help with future podcast planning! Respond to our short survey https://www.surveymonkey.com/r/MPYLX9F, and you’ll be entered in our quarterly drawing for a $25 Etsy gift card. Winners notified by email.

Funding for CF Community Voices 2025 has been provided to date by Viatris and Vertex Pharmaceuticals.

]]> false No 2873 496 full Gut Microbiome & Cystic Fibrosis — Emily Yelencich, MS, RD (Video) Gut Microbiome & Cystic Fibrosis — Emily Yelencich, MS, RD (Video) https://cfri.podbean.com/e/gut-microbiome-cystic-fibrosis-%e2%80%94-emily-yelencich-ms-rd/ https://cfri.podbean.com/e/gut-microbiome-cystic-fibrosis-%e2%80%94-emily-yelencich-ms-rd/#comments Wed, 24 Sep 2025 06:49:55 -0700 cfri.podbean.com/1e973093-30a7-3a4a-84d9-6c5f43448c5b Many people with cystic fibrosis report gastrointestinal discomfort as a daily challenge and barrier to optimal quality of life. In this podcast, Emily Yelencich, MS, RD, provides an overview of the key differences within the microbiome of people with CF compared to the general population, and how those differences result in increased difficulties with digestion, reduced absorption of nutrients, lower lung function, and higher rates of colorectal cancer. Yelencich rounds out the conversation with useful diet, nutrition, and bowel regimen tips that can help inform conversations with one’s CF care team.

Click here to donate to CFRI and support the cystic fibrosis community worldwide: https://cfri.app.neoncrm.com/forms/do...

Your thoughts are valuable to us and will help with future podcast planning! Respond to our short survey https://www.surveymonkey.com/r/MPYLX9F, and you’ll be entered in our quarterly drawing for a $25 Etsy gift card. Winners notified by email.

Funding for CF Community Voices 2025 has been provided to date by Viatris and Vertex Pharmaceuticals.

]]> Many people with cystic fibrosis report gastrointestinal discomfort as a daily challenge and barrier to optimal quality of life. In this podcast, Emily Yelencich, MS, RD, provides an overview of the key differences within the microbiome of people with CF compared to the general population, and how those differences result in increased difficulties with digestion, reduced absorption of nutrients, lower lung function, and higher rates of colorectal cancer. Yelencich rounds out the conversation with useful diet, nutrition, and bowel regimen tips that can help inform conversations with one’s CF care team.

Click here to donate to CFRI and support the cystic fibrosis community worldwide: https://cfri.app.neoncrm.com/forms/do...

Your thoughts are valuable to us and will help with future podcast planning! Respond to our short survey https://www.surveymonkey.com/r/MPYLX9F, and you’ll be entered in our quarterly drawing for a $25 Etsy gift card. Winners notified by email.

Funding for CF Community Voices 2025 has been provided to date by Viatris and Vertex Pharmaceuticals.

]]> false No 2012 494 full Gut Microbiome & Cystic Fibrosis — Emily Yelencich, MS, RD (Audio) Gut Microbiome & Cystic Fibrosis — Emily Yelencich, MS, RD (Audio) https://cfri.podbean.com/e/gut-microbiome-cystic-fibrosis-%e2%80%94-emily-yelencich-ms-rd-audio/ https://cfri.podbean.com/e/gut-microbiome-cystic-fibrosis-%e2%80%94-emily-yelencich-ms-rd-audio/#comments Wed, 24 Sep 2025 06:49:46 -0700 cfri.podbean.com/19f632cb-46f1-33d7-bca6-531ad85085b5 Many people with cystic fibrosis report gastrointestinal discomfort as a daily challenge and barrier to optimal quality of life. In this podcast, Emily Yelencich, MS, RD, provides an overview of the key differences within the microbiome of people with CF compared to the general population, and how those differences result in increased difficulties with digestion, reduced absorption of nutrients, lower lung function, and higher rates of colorectal cancer. Yelencich rounds out the conversation with useful diet, nutrition, and bowel regimen tips that can help inform conversations with one’s CF care team.

Click here to donate to CFRI and support the cystic fibrosis community worldwide: https://cfri.app.neoncrm.com/forms/do...

Your thoughts are valuable to us and will help with future podcast planning! Respond to our short survey https://www.surveymonkey.com/r/MPYLX9F, and you’ll be entered in our quarterly drawing for a $25 Etsy gift card. Winners notified by email.

Funding for CF Community Voices 2025 has been provided to date by Viatris and Vertex Pharmaceuticals.

]]> Many people with cystic fibrosis report gastrointestinal discomfort as a daily challenge and barrier to optimal quality of life. In this podcast, Emily Yelencich, MS, RD, provides an overview of the key differences within the microbiome of people with CF compared to the general population, and how those differences result in increased difficulties with digestion, reduced absorption of nutrients, lower lung function, and higher rates of colorectal cancer. Yelencich rounds out the conversation with useful diet, nutrition, and bowel regimen tips that can help inform conversations with one’s CF care team.

Click here to donate to CFRI and support the cystic fibrosis community worldwide: https://cfri.app.neoncrm.com/forms/do...

Your thoughts are valuable to us and will help with future podcast planning! Respond to our short survey https://www.surveymonkey.com/r/MPYLX9F, and you’ll be entered in our quarterly drawing for a $25 Etsy gift card. Winners notified by email.

Funding for CF Community Voices 2025 has been provided to date by Viatris and Vertex Pharmaceuticals.

]]> false No 2012 495 full Resistant Infections in Cystic Fibrosis — Ali Al Safi, MD (Video) Resistant Infections in Cystic Fibrosis — Ali Al Safi, MD (Video) https://cfri.podbean.com/e/resistant-infections-in-cystic-fibrosis-%e2%80%94-ali-al-safi-md/ https://cfri.podbean.com/e/resistant-infections-in-cystic-fibrosis-%e2%80%94-ali-al-safi-md/#comments Wed, 17 Sep 2025 09:15:31 -0700 cfri.podbean.com/8d7e22db-fa6b-3e40-b457-debf025ea6c1 People with cystic fibrosis face an increased risk of developing infections, which can lead to severe adverse health impacts. In this podcast, Dr. Ali Al Safi provides an overview of common CF-specific pathogens and their clinical implications, discusses how resistant infections develop, and provides insight into current evidence for optimal duration of antimicrobial therapy.

Click here to donate to CFRI and support the cystic fibrosis community worldwide: https://cfri.app.neoncrm.com/forms/donation

Your thoughts are valuable to us and will help with future podcast planning! Respond to our short survey https://www.surveymonkey.com/r/MPYLX9F, and you’ll be entered in our quarterly drawing for a $25 Etsy gift card. Winners notified by email.

Funding for CF Community Voices 2025 has been provided to date by Viatris and Vertex Pharmaceuticals.

]]> People with cystic fibrosis face an increased risk of developing infections, which can lead to severe adverse health impacts. In this podcast, Dr. Ali Al Safi provides an overview of common CF-specific pathogens and their clinical implications, discusses how resistant infections develop, and provides insight into current evidence for optimal duration of antimicrobial therapy.

Click here to donate to CFRI and support the cystic fibrosis community worldwide: https://cfri.app.neoncrm.com/forms/donation

Your thoughts are valuable to us and will help with future podcast planning! Respond to our short survey https://www.surveymonkey.com/r/MPYLX9F, and you’ll be entered in our quarterly drawing for a $25 Etsy gift card. Winners notified by email.

Funding for CF Community Voices 2025 has been provided to date by Viatris and Vertex Pharmaceuticals.

]]> false No 2743 490 full Resistant Infections in Cystic Fibrosis — Ali Al Safi, MD (Audio) Resistant Infections in Cystic Fibrosis — Ali Al Safi, MD (Audio) https://cfri.podbean.com/e/resistant-infections-in-cystic-fibrosis-%e2%80%94-ali-al-safi-md-audio/ https://cfri.podbean.com/e/resistant-infections-in-cystic-fibrosis-%e2%80%94-ali-al-safi-md-audio/#comments Wed, 17 Sep 2025 09:14:49 -0700 cfri.podbean.com/a904a8bd-35c0-3c5e-a214-333472add113 People with cystic fibrosis face an increased risk of developing infections, which can lead to severe adverse health impacts. In this podcast, Dr. Ali Al Safi provides an overview of common CF-specific pathogens and their clinical implications, discusses how resistant infections develop, and provides insight into current evidence for optimal duration of antimicrobial therapy.

Click here to donate to CFRI and support the cystic fibrosis community worldwide: https://cfri.app.neoncrm.com/forms/donation

Your thoughts are valuable to us and will help with future podcast planning! Respond to our short survey https://www.surveymonkey.com/r/MPYLX9F, and you’ll be entered in our quarterly drawing for a $25 Etsy gift card. Winners notified by email.

Funding for CF Community Voices 2025 has been provided to date by Viatris and Vertex Pharmaceuticals.

]]> People with cystic fibrosis face an increased risk of developing infections, which can lead to severe adverse health impacts. In this podcast, Dr. Ali Al Safi provides an overview of common CF-specific pathogens and their clinical implications, discusses how resistant infections develop, and provides insight into current evidence for optimal duration of antimicrobial therapy.

Click here to donate to CFRI and support the cystic fibrosis community worldwide: https://cfri.app.neoncrm.com/forms/donation

Your thoughts are valuable to us and will help with future podcast planning! Respond to our short survey https://www.surveymonkey.com/r/MPYLX9F, and you’ll be entered in our quarterly drawing for a $25 Etsy gift card. Winners notified by email.

Funding for CF Community Voices 2025 has been provided to date by Viatris and Vertex Pharmaceuticals.

]]> false No 2743 492 full Bacteriophages in Cystic Fibrosis Lung Infections — Paul Bollyky, MD, PhD (Video) Bacteriophages in Cystic Fibrosis Lung Infections — Paul Bollyky, MD, PhD (Video) https://cfri.podbean.com/e/bacteriophages-in-cystic-fibrosis-lung-infections-%e2%80%94-paul-bollyky-md-phd-video/ https://cfri.podbean.com/e/bacteriophages-in-cystic-fibrosis-lung-infections-%e2%80%94-paul-bollyky-md-phd-video/#comments Wed, 17 Sep 2025 09:14:36 -0700 cfri.podbean.com/31ec6c95-5336-3d75-a882-e5f231432ca6 Advancements in CF care have led to increased quality and length of life for many people with CF, yet chronic lung infections remain a persistent challenge for many. In this podcast, Paul Bollyky, MD, PhD, explains what bacteriophages are, how they are being used to treat certain infections faced by people with CF, and what the future of research for this type of treatment looks like.

Click here to donate to CFRI and support the cystic fibrosis community worldwide: https://cfri.app.neoncrm.com/forms/donation

Your thoughts are valuable to us and will help with future podcast planning! Respond to our short survey https://www.surveymonkey.com/r/MPYLX9F, and you’ll be entered in our quarterly drawing for a $25 Etsy gift card. Winners notified by email.

Funding for CF Community Voices 2025 has been provided by Viatris and Vertex Pharmaceuticals.

]]> Advancements in CF care have led to increased quality and length of life for many people with CF, yet chronic lung infections remain a persistent challenge for many. In this podcast, Paul Bollyky, MD, PhD, explains what bacteriophages are, how they are being used to treat certain infections faced by people with CF, and what the future of research for this type of treatment looks like.

Click here to donate to CFRI and support the cystic fibrosis community worldwide: https://cfri.app.neoncrm.com/forms/donation

Your thoughts are valuable to us and will help with future podcast planning! Respond to our short survey https://www.surveymonkey.com/r/MPYLX9F, and you’ll be entered in our quarterly drawing for a $25 Etsy gift card. Winners notified by email.

Funding for CF Community Voices 2025 has been provided by Viatris and Vertex Pharmaceuticals.

]]> false No 3814 491 full Bacteriophages in Cystic Fibrosis Lung Infections — Paul Bollyky, MD, PhD (Audio) Bacteriophages in Cystic Fibrosis Lung Infections — Paul Bollyky, MD, PhD (Audio) https://cfri.podbean.com/e/bacteriophages-in-cystic-fibrosis-lung-infections-%e2%80%94-paul-bollyky-md-phd-audio/ https://cfri.podbean.com/e/bacteriophages-in-cystic-fibrosis-lung-infections-%e2%80%94-paul-bollyky-md-phd-audio/#comments Wed, 17 Sep 2025 09:14:11 -0700 cfri.podbean.com/c2fc7721-ef60-328c-89a3-f5bc63bd97eb Advancements in CF care have led to increased quality and length of life for many people with CF, yet chronic lung infections remain a persistent challenge for many. In this podcast, Paul Bollyky, MD, PhD, explains what bacteriophages are, how they are being used to treat certain infections faced by people with CF, and what the future of research for this type of treatment looks like.

Click here to donate to CFRI and support the cystic fibrosis community worldwide: https://cfri.app.neoncrm.com/forms/donation

Your thoughts are valuable to us and will help with future podcast planning! Respond to our short survey https://www.surveymonkey.com/r/MPYLX9F, and you’ll be entered in our quarterly drawing for a $25 Etsy gift card. Winners notified by email.

Funding for CF Community Voices 2025 has been provided by Viatris and Vertex Pharmaceuticals.

]]> Advancements in CF care have led to increased quality and length of life for many people with CF, yet chronic lung infections remain a persistent challenge for many. In this podcast, Paul Bollyky, MD, PhD, explains what bacteriophages are, how they are being used to treat certain infections faced by people with CF, and what the future of research for this type of treatment looks like.

Click here to donate to CFRI and support the cystic fibrosis community worldwide: https://cfri.app.neoncrm.com/forms/donation

Your thoughts are valuable to us and will help with future podcast planning! Respond to our short survey https://www.surveymonkey.com/r/MPYLX9F, and you’ll be entered in our quarterly drawing for a $25 Etsy gift card. Winners notified by email.

Funding for CF Community Voices 2025 has been provided by Viatris and Vertex Pharmaceuticals.

]]> false No 3814 493 full Cystic Fibrosis, Body Image & Eating Disorders (Video) Cystic Fibrosis, Body Image & Eating Disorders (Video) https://cfri.podbean.com/e/body-image-and-eating-disorders/ https://cfri.podbean.com/e/body-image-and-eating-disorders/#comments Tue, 09 Sep 2025 17:21:00 -0700 cfri.podbean.com/ae880d39-fd9c-3d9d-bbec-3118aca49eeb People with cystic fibrosis may face an increased risk of developing eating disorders and body image challenges. Factors such as the burden of eating, pancreatic insufficiency, the impact of medications, and exercise disturbances have all been documented as contributing concerns for individuals living with CF. In this podcast, individuals with CF—Daelyn James (@,daelyn_j ) Amy Lauren, and Madison Gore—share their personal experiences navigating body image challenges, disordered eating, and societal expectations. Following these personal perspectives, Dr. Amy Darukhanavala (Daru), Associate Professor of Pediatrics and pediatric endocrinologist at Yale Medical Center in New Haven, CT, provides clinical insights. Dr. Daru provides an overview of the literature on the topic of CF, eating disorders, and body image, and provides considerations for working with one's multidisciplinary CF team to find support.

Click here to donate to CFRI and support the cystic fibrosis community worldwide: https://cfri.app.neoncrm.com/forms/donation

Your thoughts are valuable to us and will help with future podcast planning! Respond to our short survey https://www.surveymonkey.com/r/MPYLX9F, and you’ll be entered in our quarterly drawing for a $25 Etsy gift card. Winners notified by email.

Funding for CF Community Voices 2025 has been provided by Viatris and Vertex Pharmaceuticals.

]]> People with cystic fibrosis may face an increased risk of developing eating disorders and body image challenges. Factors such as the burden of eating, pancreatic insufficiency, the impact of medications, and exercise disturbances have all been documented as contributing concerns for individuals living with CF. In this podcast, individuals with CF—Daelyn James (@,daelyn_j ) Amy Lauren, and Madison Gore—share their personal experiences navigating body image challenges, disordered eating, and societal expectations. Following these personal perspectives, Dr. Amy Darukhanavala (Daru), Associate Professor of Pediatrics and pediatric endocrinologist at Yale Medical Center in New Haven, CT, provides clinical insights. Dr. Daru provides an overview of the literature on the topic of CF, eating disorders, and body image, and provides considerations for working with one's multidisciplinary CF team to find support.

Click here to donate to CFRI and support the cystic fibrosis community worldwide: https://cfri.app.neoncrm.com/forms/donation

Your thoughts are valuable to us and will help with future podcast planning! Respond to our short survey https://www.surveymonkey.com/r/MPYLX9F, and you’ll be entered in our quarterly drawing for a $25 Etsy gift card. Winners notified by email.

Funding for CF Community Voices 2025 has been provided by Viatris and Vertex Pharmaceuticals.

]]> false No 1806 489 full CF Bridge of Hope: A Conversation with Dr. Golnar Raissi (Video) CF Bridge of Hope: A Conversation with Dr. Golnar Raissi (Video) https://cfri.podbean.com/e/bridge-of-hope-video/ https://cfri.podbean.com/e/bridge-of-hope-video/#comments Wed, 03 Sep 2025 14:44:07 -0700 cfri.podbean.com/0fac82b9-0564-3d2f-83bb-e65e045c1e32 In this podcast, Dr. Golnar Raissi, co-founder of the nonprofit CF Bridge of Hope, describes how the program pursues its mission to improve the health of individuals with cystic fibrosis and extend the same treatments that are available in the United States to those who live in resource-limited areas of the world. The program brings children with CF to the United States to stabilize their health and equip them with therapies to continue care in their home countries. CF Bridge of Hope's partnerships include doctors, care providers, community members, faith-based organizations, and elected officials who volunteer their time. Dr, Raissi inspires others to care for our CF community members around the globe.

To learn more about CF Bridge of Hope, go to www.cfbridgeofhope.org.

Click here to donate to CFRI and support the cystic fibrosis community worldwide: https://cfri.app.neoncrm.com/forms/donation

Your thoughts are valuable to us and will help with future podcast planning! Respond to our short survey https://www.surveymonkey.com/r/MPYLX9F, and you’ll be entered in our quarterly drawing for a $25 Etsy gift card. Winners notified by email.

Funding for CF Community Voices 2025 has been provided by Viatris and Vertex Pharmaceuticals.

]]> In this podcast, Dr. Golnar Raissi, co-founder of the nonprofit CF Bridge of Hope, describes how the program pursues its mission to improve the health of individuals with cystic fibrosis and extend the same treatments that are available in the United States to those who live in resource-limited areas of the world. The program brings children with CF to the United States to stabilize their health and equip them with therapies to continue care in their home countries. CF Bridge of Hope's partnerships include doctors, care providers, community members, faith-based organizations, and elected officials who volunteer their time. Dr, Raissi inspires others to care for our CF community members around the globe.

To learn more about CF Bridge of Hope, go to www.cfbridgeofhope.org.

Click here to donate to CFRI and support the cystic fibrosis community worldwide: https://cfri.app.neoncrm.com/forms/donation

Your thoughts are valuable to us and will help with future podcast planning! Respond to our short survey https://www.surveymonkey.com/r/MPYLX9F, and you’ll be entered in our quarterly drawing for a $25 Etsy gift card. Winners notified by email.

Funding for CF Community Voices 2025 has been provided by Viatris and Vertex Pharmaceuticals.

]]> false No 1144 488 full CF Bridge of Hope: A Conversation with Dr. Golnar Raissi (Audio) CF Bridge of Hope: A Conversation with Dr. Golnar Raissi (Audio) https://cfri.podbean.com/e/bridge-of-hope-audio/ https://cfri.podbean.com/e/bridge-of-hope-audio/#comments Wed, 03 Sep 2025 13:29:52 -0700 cfri.podbean.com/343c3c5e-44a2-376d-9a49-0aab3402dbbf In this podcast, Dr. Golnar Raissi, co-founder of the nonprofit CF Bridge of Hope, describes how the program pursues its mission to improve the health of individuals with cystic fibrosis and extend the same treatments that are available in the United States to those who live in resource-limited areas of the world. The program brings children with CF to the United States to stabilize their health and equip them with therapies to continue care in their home countries. CF Bridge of Hope's partnerships include doctors, care providers, community members, faith-based organizations, and elected officials who volunteer their time. Dr, Raissi inspires others to care for our CF community members around the globe.

To learn more about CF Bridge of Hope, go to www.cfbridgeofhope.org.

Click here to donate to CFRI and support the cystic fibrosis community worldwide: https://cfri.app.neoncrm.com/forms/donation

Your thoughts are valuable to us and will help with future podcast planning! Respond to our short survey https://www.surveymonkey.com/r/MPYLX9F, and you’ll be entered in our quarterly drawing for a $25 Etsy gift card. Winners notified by email.

Funding for CF Community Voices 2025 has been provided by Viatris and Vertex Pharmaceuticals.

]]> In this podcast, Dr. Golnar Raissi, co-founder of the nonprofit CF Bridge of Hope, describes how the program pursues its mission to improve the health of individuals with cystic fibrosis and extend the same treatments that are available in the United States to those who live in resource-limited areas of the world. The program brings children with CF to the United States to stabilize their health and equip them with therapies to continue care in their home countries. CF Bridge of Hope's partnerships include doctors, care providers, community members, faith-based organizations, and elected officials who volunteer their time. Dr, Raissi inspires others to care for our CF community members around the globe.

To learn more about CF Bridge of Hope, go to www.cfbridgeofhope.org.

Click here to donate to CFRI and support the cystic fibrosis community worldwide: https://cfri.app.neoncrm.com/forms/donation

Your thoughts are valuable to us and will help with future podcast planning! Respond to our short survey https://www.surveymonkey.com/r/MPYLX9F, and you’ll be entered in our quarterly drawing for a $25 Etsy gift card. Winners notified by email.

Funding for CF Community Voices 2025 has been provided by Viatris and Vertex Pharmaceuticals.

]]> false No 1139 487 full Nontuberculous mycobacteria (NTM) & Cystic Fibrosis - Amy Leitman, JD (Video) Nontuberculous mycobacteria (NTM) & Cystic Fibrosis - Amy Leitman, JD (Video) https://cfri.podbean.com/e/ntm-video/ https://cfri.podbean.com/e/ntm-video/#comments Mon, 04 Aug 2025 10:31:15 -0700 cfri.podbean.com/50279703-53db-35ff-a87b-9ba0bfdb7116 Nontuberculous mycobacteria (NTM) infection prevalence has increased among those with cystic fibrosis (CF), impacting 1 out of 10 people with CF. In this podcast, Amy Leitman, JD, shares what nontuberculous mycobacterial (NTM) lung disease is, and why its resistance to many treatments poses serious risks to those living with cystic fibrosis. Amy is President of NTM Info & Research (NTMir), a national non-profit organization dedicated to supporting patients with NTM through global respiratory health awareness (including World NTM Awareness Day on August 4), patient advocacy and policy reform.

For more information on NTMir and World NTM Awareness Day: NTMir Facebook, Instagram (@ntminfo), X (@ntminfo), and LinkedIn.

Click here to donate to CFRI and support the cystic fibrosis community worldwide: https://cfri.app.neoncrm.com/forms/donation

Your thoughts are valuable to us and will help with future podcast planning! Respond to our short survey https://www.surveymonkey.com/r/MPYLX9F, and you’ll be entered in our quarterly drawing for a $25 Etsy gift card. Winners notified by email.

Funding for CF Community Voices 2025 has been provided to date by Viatris and Vertex Pharmaceuticals.

]]> Nontuberculous mycobacteria (NTM) infection prevalence has increased among those with cystic fibrosis (CF), impacting 1 out of 10 people with CF. In this podcast, Amy Leitman, JD, shares what nontuberculous mycobacterial (NTM) lung disease is, and why its resistance to many treatments poses serious risks to those living with cystic fibrosis. Amy is President of NTM Info & Research (NTMir), a national non-profit organization dedicated to supporting patients with NTM through global respiratory health awareness (including World NTM Awareness Day on August 4), patient advocacy and policy reform.

For more information on NTMir and World NTM Awareness Day: NTMir Facebook, Instagram (@ntminfo), X (@ntminfo), and LinkedIn.

Click here to donate to CFRI and support the cystic fibrosis community worldwide: https://cfri.app.neoncrm.com/forms/donation

Your thoughts are valuable to us and will help with future podcast planning! Respond to our short survey https://www.surveymonkey.com/r/MPYLX9F, and you’ll be entered in our quarterly drawing for a $25 Etsy gift card. Winners notified by email.

Funding for CF Community Voices 2025 has been provided to date by Viatris and Vertex Pharmaceuticals.

]]> false No 734 486 full Nontuberculous mycobacteria (NTM) & Cystic Fibrosis - Amy Leitman, JD (Audio) Nontuberculous mycobacteria (NTM) & Cystic Fibrosis - Amy Leitman, JD (Audio) https://cfri.podbean.com/e/ntm-audio/ https://cfri.podbean.com/e/ntm-audio/#comments Mon, 04 Aug 2025 10:31:05 -0700 cfri.podbean.com/df67d2c9-c6cf-31e1-8008-d9b88f89c3ac Nontuberculous mycobacteria (NTM) infection prevalence has increased among those with cystic fibrosis (CF), impacting 1 out of 10 people with CF. In this podcast, Amy Leitman, JD, shares what nontuberculous mycobacterial (NTM) lung disease is, and why its resistance to many treatments poses serious risks to those living with cystic fibrosis. Amy is President of NTM Info & Research (NTMir), a national non-profit organization dedicated to supporting patients with NTM through global respiratory health awareness (including World NTM Awareness Day on August 4), patient advocacy and policy reform.

For more information on NTMir and World NTM Awareness Day: NTMir Facebook, Instagram (@ntminfo), X (@ntminfo), and LinkedIn.

Click here to donate to CFRI and support the cystic fibrosis community worldwide: https://cfri.app.neoncrm.com/forms/donation

Your thoughts are valuable to us and will help with future podcast planning! Respond to our short survey https://www.surveymonkey.com/r/MPYLX9F, and you’ll be entered in our quarterly drawing for a $25 Etsy gift card. Winners notified by email.

Funding for CF Community Voices 2025 has been provided to date by Viatris and Vertex Pharmaceuticals.

]]> Nontuberculous mycobacteria (NTM) infection prevalence has increased among those with cystic fibrosis (CF), impacting 1 out of 10 people with CF. In this podcast, Amy Leitman, JD, shares what nontuberculous mycobacterial (NTM) lung disease is, and why its resistance to many treatments poses serious risks to those living with cystic fibrosis. Amy is President of NTM Info & Research (NTMir), a national non-profit organization dedicated to supporting patients with NTM through global respiratory health awareness (including World NTM Awareness Day on August 4), patient advocacy and policy reform.

For more information on NTMir and World NTM Awareness Day: NTMir Facebook, Instagram (@ntminfo), X (@ntminfo), and LinkedIn.

Click here to donate to CFRI and support the cystic fibrosis community worldwide: https://cfri.app.neoncrm.com/forms/donation

Your thoughts are valuable to us and will help with future podcast planning! Respond to our short survey https://www.surveymonkey.com/r/MPYLX9F, and you’ll be entered in our quarterly drawing for a $25 Etsy gift card. Winners notified by email.

Funding for CF Community Voices 2025 has been provided to date by Viatris and Vertex Pharmaceuticals.

]]> false No 734 485 full Managing CF and Incontinence (Video) Managing CF and Incontinence (Video) https://cfri.podbean.com/e/incontinence-video/ https://cfri.podbean.com/e/incontinence-video/#comments Wed, 04 Jun 2025 12:12:39 -0700 cfri.podbean.com/9345576c-dfe7-341b-b6d3-55130369e46d Despite the higher rates of incontinence among people with CF - due to coughing, which puts strain on one's pelvic floor muscles - stigma and embarrassment keep many people from seeking treatment. In this podcast, Georgia Brown, MLA, an adult living with CF, shares her personal journey with incontinence, opening up about her initial challenges in speaking with providers, how she eventually found effective treatment, and the significant improvement in her quality of life after seeking medical support. Georgia is joined by Dr. Abigail Shatkin-Margolis, Associate Professor of Obstetrics & Gynecology in the Division of Urogynecology & Minimally Invasive Gynecologic Surgery at the University of California San Francisco. Dr. Shatkin-Margolis discusses what incontinence is, its various forms, its specific impact on people with CF, and the range of treatment options available.

Your thoughts are valuable to us and will help with future podcast planning! Respond to our short survey https://www.surveymonkey.com/r/MPYLX9F, and you’ll be entered in our quarterly drawing for a $25 Etsy gift card. Winners notified by email.

Funding for CF Community Voices 2025 has been provided by Viatris and Vertex Pharmaceuticals.

]]> Despite the higher rates of incontinence among people with CF - due to coughing, which puts strain on one's pelvic floor muscles - stigma and embarrassment keep many people from seeking treatment. In this podcast, Georgia Brown, MLA, an adult living with CF, shares her personal journey with incontinence, opening up about her initial challenges in speaking with providers, how she eventually found effective treatment, and the significant improvement in her quality of life after seeking medical support. Georgia is joined by Dr. Abigail Shatkin-Margolis, Associate Professor of Obstetrics & Gynecology in the Division of Urogynecology & Minimally Invasive Gynecologic Surgery at the University of California San Francisco. Dr. Shatkin-Margolis discusses what incontinence is, its various forms, its specific impact on people with CF, and the range of treatment options available.

Your thoughts are valuable to us and will help with future podcast planning! Respond to our short survey https://www.surveymonkey.com/r/MPYLX9F, and you’ll be entered in our quarterly drawing for a $25 Etsy gift card. Winners notified by email.

Funding for CF Community Voices 2025 has been provided by Viatris and Vertex Pharmaceuticals.

]]> false No 1747 484 full Managing CF and Incontinence (Audio) Managing CF and Incontinence (Audio) https://cfri.podbean.com/e/incontinence-audio/ https://cfri.podbean.com/e/incontinence-audio/#comments Wed, 04 Jun 2025 12:12:28 -0700 cfri.podbean.com/78ba14fe-b715-319a-a4fe-f3cfde4569f9 Despite the higher rates of incontinence among people with CF - due to coughing, which puts strain on one's pelvic floor muscles - stigma and embarrassment keep many people from seeking treatment. In this podcast, Georgia Brown, MLA, an adult living with CF, shares her personal journey with incontinence, opening up about her initial challenges in speaking with providers, how she eventually found effective treatment, and the significant improvement in her quality of life after seeking medical support. Georgia is joined by Dr. Abigail Shatkin-Margolis, Associate Professor of Obstetrics & Gynecology in the Division of Urogynecology & Minimally Invasive Gynecologic Surgery at the University of California San Francisco. Dr. Shatkin-Margolis discusses what incontinence is, its various forms, its specific impact on people with CF, and the range of treatment options available.

Your thoughts are valuable to us and will help with future podcast planning! Respond to our short survey https://www.surveymonkey.com/r/MPYLX9F, and you’ll be entered in our quarterly drawing for a $25 Etsy gift card. Winners notified by email.

Funding for CF Community Voices 2025 has been provided by Viatris and Vertex Pharmaceuticals.

]]> Despite the higher rates of incontinence among people with CF - due to coughing, which puts strain on one's pelvic floor muscles - stigma and embarrassment keep many people from seeking treatment. In this podcast, Georgia Brown, MLA, an adult living with CF, shares her personal journey with incontinence, opening up about her initial challenges in speaking with providers, how she eventually found effective treatment, and the significant improvement in her quality of life after seeking medical support. Georgia is joined by Dr. Abigail Shatkin-Margolis, Associate Professor of Obstetrics & Gynecology in the Division of Urogynecology & Minimally Invasive Gynecologic Surgery at the University of California San Francisco. Dr. Shatkin-Margolis discusses what incontinence is, its various forms, its specific impact on people with CF, and the range of treatment options available.

Your thoughts are valuable to us and will help with future podcast planning! Respond to our short survey https://www.surveymonkey.com/r/MPYLX9F, and you’ll be entered in our quarterly drawing for a $25 Etsy gift card. Winners notified by email.

Funding for CF Community Voices 2025 has been provided by Viatris and Vertex Pharmaceuticals.

]]> false No 1747 483 full Unique Transplant Journeys: Stories of Strength and Resilience (Video) Unique Transplant Journeys: Stories of Strength and Resilience (Video) https://cfri.podbean.com/e/transplant-video/ https://cfri.podbean.com/e/transplant-video/#comments Wed, 23 Apr 2025 10:24:33 -0700 cfri.podbean.com/476ab70f-077f-35b3-acca-b942ddf6e35a April is National Donate Life Month, a time to raise awareness about the importance of organ donation. In this podcast, adults with CF, Elyse Elconin-Goldberg, Missy Peterson, and Willem Wery, reflect on their experiences preparing for, undergoing, and recovering from double lung transplants. With unique journeys, Elyse, Missy, and Willem discuss the joys and challenges of receiving "the gift of breath." They share how they prepared through exercise, therapy, and family support, and offer insights for others considering a transplant or becoming an organ donor. To learn more, visit www.organdonor.gov.

Click here to donate to CFRI and support the cystic fibrosis community worldwide: https://cfri.app.neoncrm.com/forms/do...

Your thoughts are valuable to us and will help with future podcast planning! Respond to our short survey https://www.surveymonkey.com/r/MPYLX9F, and you’ll be entered in our quarterly drawing for a $25 Etsy gift card. Winners notified by email.

Funding for CF Community Voices 2025 has been provided to date by Viatris and Vertex Pharmaceuticals.

]]> April is National Donate Life Month, a time to raise awareness about the importance of organ donation. In this podcast, adults with CF, Elyse Elconin-Goldberg, Missy Peterson, and Willem Wery, reflect on their experiences preparing for, undergoing, and recovering from double lung transplants. With unique journeys, Elyse, Missy, and Willem discuss the joys and challenges of receiving "the gift of breath." They share how they prepared through exercise, therapy, and family support, and offer insights for others considering a transplant or becoming an organ donor. To learn more, visit www.organdonor.gov.

Click here to donate to CFRI and support the cystic fibrosis community worldwide: https://cfri.app.neoncrm.com/forms/do...

Your thoughts are valuable to us and will help with future podcast planning! Respond to our short survey https://www.surveymonkey.com/r/MPYLX9F, and you’ll be entered in our quarterly drawing for a $25 Etsy gift card. Winners notified by email.

Funding for CF Community Voices 2025 has been provided to date by Viatris and Vertex Pharmaceuticals.

]]> false No 2064 482 full Unique Transplant Journeys: Stories of Strength and Resilience (Audio) Unique Transplant Journeys: Stories of Strength and Resilience (Audio) https://cfri.podbean.com/e/transplant-audio/ https://cfri.podbean.com/e/transplant-audio/#comments Wed, 23 Apr 2025 10:24:21 -0700 cfri.podbean.com/c368138c-2f6e-3077-af75-ddba9af672e3 April is National Donate Life Month, a time to raise awareness about the importance of organ donation. In this podcast, adults with CF, Elyse Elconin-Goldberg, Missy Peterson, and Willem Wery, reflect on their experiences preparing for, undergoing, and recovering from double lung transplants. With unique journeys, Elyse, Missy, and Willem discuss the joys and challenges of receiving "the gift of breath." They share how they prepared through exercise, therapy, and family support, and offer insights for others considering a transplant or becoming an organ donor. To learn more, visit www.organdonor.gov.

Click here to donate to CFRI and support the cystic fibrosis community worldwide: https://cfri.app.neoncrm.com/forms/do...

Your thoughts are valuable to us and will help with future podcast planning! Respond to our short survey https://www.surveymonkey.com/r/MPYLX9F, and you’ll be entered in our quarterly drawing for a $25 Etsy gift card. Winners notified by email.

Funding for CF Community Voices 2025 has been provided to date by Viatris and Vertex Pharmaceuticals.

]]> April is National Donate Life Month, a time to raise awareness about the importance of organ donation. In this podcast, adults with CF, Elyse Elconin-Goldberg, Missy Peterson, and Willem Wery, reflect on their experiences preparing for, undergoing, and recovering from double lung transplants. With unique journeys, Elyse, Missy, and Willem discuss the joys and challenges of receiving "the gift of breath." They share how they prepared through exercise, therapy, and family support, and offer insights for others considering a transplant or becoming an organ donor. To learn more, visit www.organdonor.gov.

Click here to donate to CFRI and support the cystic fibrosis community worldwide: https://cfri.app.neoncrm.com/forms/do...

Your thoughts are valuable to us and will help with future podcast planning! Respond to our short survey https://www.surveymonkey.com/r/MPYLX9F, and you’ll be entered in our quarterly drawing for a $25 Etsy gift card. Winners notified by email.

Funding for CF Community Voices 2025 has been provided to date by Viatris and Vertex Pharmaceuticals.

]]> false No 2064 481 full The Impacts of CF on Sinonasal Health & Olfactory Function — Jessa E. Miller, MD (Video) The Impacts of CF on Sinonasal Health & Olfactory Function — Jessa E. Miller, MD (Video) https://cfri.podbean.com/e/jessa-miller-video/ https://cfri.podbean.com/e/jessa-miller-video/#comments Tue, 01 Apr 2025 22:58:21 -0700 cfri.podbean.com/06c1b3b0-0490-3b57-9a49-23804711dc11 In this podcast, Dr. Jessa E. Miller—Rhinology & Skull Base Surgery Fellow at UCLA—provides background on the anatomy and function of paranasal sinuses, and the impact that ineffective CFTR protein development has on a person with cystic fibrosis’s (CF) ability to properly rid the body’s respiratory system of mucus and trapped debris. Dr. Miller touches on the common experience of Chronic Rhinosinusitis (CRS) among people with CF, with an emphasis on diagnostic criteria, impacts to proper olfactory functioning, and treatment options. Dr. Miller also expertly explains the Unified Airway Theory, which underscores the relationship between the sinuses and lungs, illuminating how pulmonary exacerbations are often seen in conjunction with CRS.

Click here to donate to CFRI and support the cystic fibrosis community worldwide: https://cfri.app.neoncrm.com/forms/do...

Your thoughts are valuable to us and will help with future podcast planning! Respond to our short survey https://www.surveymonkey.com/r/MPYLX9F, and you’ll be entered in our quarterly drawing for a $25 Etsy gift card. Winners notified by email.

Funding for CF Community Voices 2025 has been provided to date by Viatris and Vertex Pharmaceuticals.

]]> In this podcast, Dr. Jessa E. Miller—Rhinology & Skull Base Surgery Fellow at UCLA—provides background on the anatomy and function of paranasal sinuses, and the impact that ineffective CFTR protein development has on a person with cystic fibrosis’s (CF) ability to properly rid the body’s respiratory system of mucus and trapped debris. Dr. Miller touches on the common experience of Chronic Rhinosinusitis (CRS) among people with CF, with an emphasis on diagnostic criteria, impacts to proper olfactory functioning, and treatment options. Dr. Miller also expertly explains the Unified Airway Theory, which underscores the relationship between the sinuses and lungs, illuminating how pulmonary exacerbations are often seen in conjunction with CRS.

Click here to donate to CFRI and support the cystic fibrosis community worldwide: https://cfri.app.neoncrm.com/forms/do...

Your thoughts are valuable to us and will help with future podcast planning! Respond to our short survey https://www.surveymonkey.com/r/MPYLX9F, and you’ll be entered in our quarterly drawing for a $25 Etsy gift card. Winners notified by email.

Funding for CF Community Voices 2025 has been provided to date by Viatris and Vertex Pharmaceuticals.

]]> false No 2108 480 full The Impacts of CF on Sinonasal Health & Olfactory Function — Jessa E. Miller, MD (audio) The Impacts of CF on Sinonasal Health & Olfactory Function — Jessa E. Miller, MD (audio) https://cfri.podbean.com/e/jessa-miller-audio/ https://cfri.podbean.com/e/jessa-miller-audio/#comments Tue, 01 Apr 2025 22:58:05 -0700 cfri.podbean.com/24772d4d-3d87-3af8-ab37-b4eb260a6d81 In this podcast, Dr. Jessa E. Miller—Rhinology & Skull Base Surgery Fellow at UCLA—provides background on the anatomy and function of paranasal sinuses, and the impact that ineffective CFTR protein development has on a person with cystic fibrosis’s (CF) ability to properly rid the body’s respiratory system of mucus and trapped debris. Dr. Miller touches on the common experience of Chronic Rhinosinusitis (CRS) among people with CF, with an emphasis on diagnostic criteria, impacts to proper olfactory functioning, and treatment options. Dr. Miller also expertly explains the Unified Airway Theory, which underscores the relationship between the sinuses and lungs, illuminating how pulmonary exacerbations are often seen in conjunction with CRS.

Click here to donate to CFRI and support the cystic fibrosis community worldwide: https://cfri.app.neoncrm.com/forms/do...

Your thoughts are valuable to us and will help with future podcast planning! Respond to our short survey https://www.surveymonkey.com/r/MPYLX9F, and you’ll be entered in our quarterly drawing for a $25 Etsy gift card. Winners notified by email.

Funding for CF Community Voices 2025 has been provided to date by Viatris and Vertex Pharmaceuticals.

]]> In this podcast, Dr. Jessa E. Miller—Rhinology & Skull Base Surgery Fellow at UCLA—provides background on the anatomy and function of paranasal sinuses, and the impact that ineffective CFTR protein development has on a person with cystic fibrosis’s (CF) ability to properly rid the body’s respiratory system of mucus and trapped debris. Dr. Miller touches on the common experience of Chronic Rhinosinusitis (CRS) among people with CF, with an emphasis on diagnostic criteria, impacts to proper olfactory functioning, and treatment options. Dr. Miller also expertly explains the Unified Airway Theory, which underscores the relationship between the sinuses and lungs, illuminating how pulmonary exacerbations are often seen in conjunction with CRS.

Click here to donate to CFRI and support the cystic fibrosis community worldwide: https://cfri.app.neoncrm.com/forms/do...

Your thoughts are valuable to us and will help with future podcast planning! Respond to our short survey https://www.surveymonkey.com/r/MPYLX9F, and you’ll be entered in our quarterly drawing for a $25 Etsy gift card. Winners notified by email.

Funding for CF Community Voices 2025 has been provided to date by Viatris and Vertex Pharmaceuticals.

]]> false No 2108 479 full CF and Cancer - Chelsea Lau, MD (Video) CF and Cancer - Chelsea Lau, MD (Video) https://cfri.podbean.com/e/chelsea-lau-video/ https://cfri.podbean.com/e/chelsea-lau-video/#comments Wed, 19 Mar 2025 09:58:09 -0700 cfri.podbean.com/4cf6ce91-1d7d-32d5-a320-a7e2d403a486 https://cfri.app.neoncrm.com/forms/do...    Your thoughts are valuable to us and will help with future podcast planning! Respond to our short survey https://www.surveymonkey.com/r/MPYLX9F, and you’ll be entered in our quarterly drawing for a $25 Etsy gift card. Winners notified by email.    Funding for CF Community Voices 2025 has been provided to date by Viatris and Vertex Pharmaceuticals.   ]]> https://cfri.app.neoncrm.com/forms/do...    Your thoughts are valuable to us and will help with future podcast planning! Respond to our short survey https://www.surveymonkey.com/r/MPYLX9F, and you’ll be entered in our quarterly drawing for a $25 Etsy gift card. Winners notified by email.    Funding for CF Community Voices 2025 has been provided to date by Viatris and Vertex Pharmaceuticals.   ]]> false No 3128 478 full CF and Cancer - Chelsea Lau, MD (Audio) CF and Cancer - Chelsea Lau, MD (Audio) https://cfri.podbean.com/e/chelsea-lau-audio/ https://cfri.podbean.com/e/chelsea-lau-audio/#comments Wed, 19 Mar 2025 09:57:54 -0700 cfri.podbean.com/9ea0b2c4-216c-3950-8ef0-7a120e992410 https://cfri.app.neoncrm.com/forms/do...    Your thoughts are valuable to us and will help with future podcast planning! Respond to our short survey https://www.surveymonkey.com/r/MPYLX9F, and you’ll be entered in our quarterly drawing for a $25 Etsy gift card. Winners notified by email.    Funding for CF Community Voices 2025 has been provided to date by Viatris and Vertex Pharmaceuticals.   ]]> https://cfri.app.neoncrm.com/forms/do...    Your thoughts are valuable to us and will help with future podcast planning! Respond to our short survey https://www.surveymonkey.com/r/MPYLX9F, and you’ll be entered in our quarterly drawing for a $25 Etsy gift card. Winners notified by email.    Funding for CF Community Voices 2025 has been provided to date by Viatris and Vertex Pharmaceuticals.   ]]> false No 3128 477 full CFRI-Funded Researchers Advance Science and Hope (Video) CFRI-Funded Researchers Advance Science and Hope (Video) https://cfri.podbean.com/e/research-video/ https://cfri.podbean.com/e/research-video/#comments Wed, 05 Feb 2025 10:55:26 -0800 cfri.podbean.com/e4816d78-fcfc-38a2-a40e-3f17cffe9d89 In this brief video you will hear from several cystic fibrosis researchers whose work has been funded in part by the Cystic Fibrosis Research Institute. Hear about the innovative research they are pursuing, including phage therapy, stem cell research and gene editing. CFRI-funded research continues to advance our mission to find new therapies - and ultimately a cure - for cystic fibrosis.

Click here to donate to CFRI and support the cystic fibrosis community worldwide: https://cfri.app.neoncrm.com/forms/donation

Your thoughts are valuable to us and will help with future podcast planning! Respond to our short survey https://www.surveymonkey.com/r/MPYLX9F, and you’ll be entered in our quarterly drawing for a $25 Etsy gift card. Winners notified by email.

Funding for CF Community Voices 2025 has been provided to date by Viatris.

]]> In this brief video you will hear from several cystic fibrosis researchers whose work has been funded in part by the Cystic Fibrosis Research Institute. Hear about the innovative research they are pursuing, including phage therapy, stem cell research and gene editing. CFRI-funded research continues to advance our mission to find new therapies - and ultimately a cure - for cystic fibrosis.

Click here to donate to CFRI and support the cystic fibrosis community worldwide: https://cfri.app.neoncrm.com/forms/donation

Your thoughts are valuable to us and will help with future podcast planning! Respond to our short survey https://www.surveymonkey.com/r/MPYLX9F, and you’ll be entered in our quarterly drawing for a $25 Etsy gift card. Winners notified by email.

Funding for CF Community Voices 2025 has been provided to date by Viatris.

]]> false No 230 476 full CFRI-Funded Researchers Advance Science and Hope (Audio) CFRI-Funded Researchers Advance Science and Hope (Audio) https://cfri.podbean.com/e/research-audio/ https://cfri.podbean.com/e/research-audio/#comments Wed, 05 Feb 2025 10:55:10 -0800 cfri.podbean.com/88eeea66-33f9-3f81-8a6d-6d3eb4ef29e3 In this brief video you will hear from several cystic fibrosis researchers whose work has been funded in part by the Cystic Fibrosis Research Institute. Hear about the innovative research they are pursuing, including phage therapy, stem cell research and gene editing. CFRI-funded research continues to advance our mission to find new therapies - and ultimately a cure - for cystic fibrosis.

Click here to donate to CFRI and support the cystic fibrosis community worldwide: https://cfri.app.neoncrm.com/forms/donation

Your thoughts are valuable to us and will help with future podcast planning! Respond to our short survey https://www.surveymonkey.com/r/MPYLX9F, and you’ll be entered in our quarterly drawing for a $25 Etsy gift card. Winners notified by email.

Funding for CF Community Voices 2025 has been provided to date by Viatris.

]]> In this brief video you will hear from several cystic fibrosis researchers whose work has been funded in part by the Cystic Fibrosis Research Institute. Hear about the innovative research they are pursuing, including phage therapy, stem cell research and gene editing. CFRI-funded research continues to advance our mission to find new therapies - and ultimately a cure - for cystic fibrosis.

Click here to donate to CFRI and support the cystic fibrosis community worldwide: https://cfri.app.neoncrm.com/forms/donation

Your thoughts are valuable to us and will help with future podcast planning! Respond to our short survey https://www.surveymonkey.com/r/MPYLX9F, and you’ll be entered in our quarterly drawing for a $25 Etsy gift card. Winners notified by email.

Funding for CF Community Voices 2025 has been provided to date by Viatris.

]]> false No 230 475 full Modulators, Pregnancy, & The Power of Advocacy Through It All - Crystal Boeckel (Video) Modulators, Pregnancy, & The Power of Advocacy Through It All - Crystal Boeckel (Video) https://cfri.podbean.com/e/crystal-video/ https://cfri.podbean.com/e/crystal-video/#comments Wed, 15 Jan 2025 10:45:52 -0800 cfri.podbean.com/3ba19f1c-ab26-3807-b239-371f49f3ecbf In this podcast, Crystal Boeckel, an adult living with cystic fibrosis (CF), reflects on her experiences being pregnant and giving birth to her two sons, the first time off and the second time on a CFTR modulator therapy. Crystal shares the health challenges she faced in the latter half of both her pregnancies with cholestasis—a condition that occurs when bile flow from the liver to the small intestine is reduced or blocked—resulting in early labors and deliveries. Crystal discusses how these medical challenges, compounded by differing levels of support and knowledge of CF from her medical teams, impacted her emotional well-being, and how she advocated for herself when her needs were not fully met.

Click here to donate to CFRI and support the cystic fibrosis community worldwide: https://cfri.app.neoncrm.com/forms/donation

Your thoughts are valuable to us and will help with future podcast planning! Respond to our short survey https://www.surveymonkey.com/r/MPYLX9F, and you’ll be entered in our quarterly drawing for a $25 Etsy gift card. Winners notified by email.

Funding for CF Community Voices 2025 has been provided to date by Viatris.

]]> In this podcast, Crystal Boeckel, an adult living with cystic fibrosis (CF), reflects on her experiences being pregnant and giving birth to her two sons, the first time off and the second time on a CFTR modulator therapy. Crystal shares the health challenges she faced in the latter half of both her pregnancies with cholestasis—a condition that occurs when bile flow from the liver to the small intestine is reduced or blocked—resulting in early labors and deliveries. Crystal discusses how these medical challenges, compounded by differing levels of support and knowledge of CF from her medical teams, impacted her emotional well-being, and how she advocated for herself when her needs were not fully met.

Click here to donate to CFRI and support the cystic fibrosis community worldwide: https://cfri.app.neoncrm.com/forms/donation

Your thoughts are valuable to us and will help with future podcast planning! Respond to our short survey https://www.surveymonkey.com/r/MPYLX9F, and you’ll be entered in our quarterly drawing for a $25 Etsy gift card. Winners notified by email.

Funding for CF Community Voices 2025 has been provided to date by Viatris.

]]> false No 398 474 full Modulators, Pregnancy, & The Power of Advocacy Through It All - Crystal Boeckel (Audio) Modulators, Pregnancy, & The Power of Advocacy Through It All - Crystal Boeckel (Audio) https://cfri.podbean.com/e/crystal-audio/ https://cfri.podbean.com/e/crystal-audio/#comments Wed, 15 Jan 2025 10:45:39 -0800 cfri.podbean.com/9470a8a1-ec45-3699-baf5-005ab6004761 In this podcast, Crystal Boeckel, an adult living with cystic fibrosis (CF), reflects on her experiences being pregnant and giving birth to her two sons, the first time off and the second time on a CFTR modulator therapy. Crystal shares the health challenges she faced in the latter half of both her pregnancies with cholestasis—a condition that occurs when bile flow from the liver to the small intestine is reduced or blocked—resulting in early labors and deliveries. Crystal discusses how these medical challenges, compounded by differing levels of support and knowledge of CF from her medical teams, impacted her emotional well-being, and how she advocated for herself when her needs were not fully met.

Click here to donate to CFRI and support the cystic fibrosis community worldwide: https://cfri.app.neoncrm.com/forms/donation

Your thoughts are valuable to us and will help with future podcast planning! Respond to our short survey https://www.surveymonkey.com/r/MPYLX9F, and you’ll be entered in our quarterly drawing for a $25 Etsy gift card. Winners notified by email.

Funding for CF Community Voices 2025 has been provided to date by Viatris.

]]> In this podcast, Crystal Boeckel, an adult living with cystic fibrosis (CF), reflects on her experiences being pregnant and giving birth to her two sons, the first time off and the second time on a CFTR modulator therapy. Crystal shares the health challenges she faced in the latter half of both her pregnancies with cholestasis—a condition that occurs when bile flow from the liver to the small intestine is reduced or blocked—resulting in early labors and deliveries. Crystal discusses how these medical challenges, compounded by differing levels of support and knowledge of CF from her medical teams, impacted her emotional well-being, and how she advocated for herself when her needs were not fully met.

Click here to donate to CFRI and support the cystic fibrosis community worldwide: https://cfri.app.neoncrm.com/forms/donation

Your thoughts are valuable to us and will help with future podcast planning! Respond to our short survey https://www.surveymonkey.com/r/MPYLX9F, and you’ll be entered in our quarterly drawing for a $25 Etsy gift card. Winners notified by email.

Funding for CF Community Voices 2025 has been provided to date by Viatris.

]]> false No 423 473 full Matt De Fina's CF Journey: From Double Lung Transplant to Napa Valley Winemaker (Video) Matt De Fina's CF Journey: From Double Lung Transplant to Napa Valley Winemaker (Video) https://cfri.podbean.com/e/matt-de-fina-video/ https://cfri.podbean.com/e/matt-de-fina-video/#comments Wed, 18 Dec 2024 11:15:42 -0800 cfri.podbean.com/ebd03d9a-1bc7-349c-9c72-07737fdab102 Matt De Fina shares the highs and lows of his life with cystic fibrosis (CF), including two double lung transplants and a career shift to winemaking in the Napa Valley. Hear about his transplant journey, and the people, events and activities that inspired his rapid recovery. Learn about the business he and his wife Denise launched, De Fina Family Cellars, the inspiration behind the artwork and the wine itself (cabernet franc = CF), and the ways in which the business helps support other CF programs.

Click here to donate to CFRI and support the cystic fibrosis community worldwide: https://cfri.app.neoncrm.com/forms/donation

CF Community Voices is made possible through support from Viatris, Vertex Pharmaceuticals, and Gilead Sciences.

]]> Matt De Fina shares the highs and lows of his life with cystic fibrosis (CF), including two double lung transplants and a career shift to winemaking in the Napa Valley. Hear about his transplant journey, and the people, events and activities that inspired his rapid recovery. Learn about the business he and his wife Denise launched, De Fina Family Cellars, the inspiration behind the artwork and the wine itself (cabernet franc = CF), and the ways in which the business helps support other CF programs.

Click here to donate to CFRI and support the cystic fibrosis community worldwide: https://cfri.app.neoncrm.com/forms/donation

CF Community Voices is made possible through support from Viatris, Vertex Pharmaceuticals, and Gilead Sciences.

]]> false No 1675 472 full Matt De Fina's CF Journey: From Double Lung Transplant to Napa Valley Winemaker (Audio) Matt De Fina's CF Journey: From Double Lung Transplant to Napa Valley Winemaker (Audio) https://cfri.podbean.com/e/matt-de-fina-audio/ https://cfri.podbean.com/e/matt-de-fina-audio/#comments Wed, 18 Dec 2024 11:15:29 -0800 cfri.podbean.com/ee491493-7042-3976-9714-535044629d06 Matt De Fina shares the highs and lows of his life with cystic fibrosis (CF), including two double lung transplants and a career shift to winemaking in the Napa Valley. Hear about his transplant journey, and the people, events and activities that inspired his rapid recovery. Learn about the business he and his wife Denise launched, De Fina Family Cellars, the inspiration behind the artwork and the wine itself (cabernet franc = CF), and the ways in which the business helps support other CF programs.

Click here to donate to CFRI and support the cystic fibrosis community worldwide: https://cfri.app.neoncrm.com/forms/donation

CF Community Voices is made possible through support from Viatris, Vertex Pharmaceuticals, and Gilead Sciences.

]]> Matt De Fina shares the highs and lows of his life with cystic fibrosis (CF), including two double lung transplants and a career shift to winemaking in the Napa Valley. Hear about his transplant journey, and the people, events and activities that inspired his rapid recovery. Learn about the business he and his wife Denise launched, De Fina Family Cellars, the inspiration behind the artwork and the wine itself (cabernet franc = CF), and the ways in which the business helps support other CF programs.

Click here to donate to CFRI and support the cystic fibrosis community worldwide: https://cfri.app.neoncrm.com/forms/donation

CF Community Voices is made possible through support from Viatris, Vertex Pharmaceuticals, and Gilead Sciences.

]]> false No 1675 471 full Pancreatic Disease and CFRT Modulators: Dr. Katie Larson Ode (Video) Pancreatic Disease and CFRT Modulators: Dr. Katie Larson Ode (Video) https://cfri.podbean.com/e/katie-video/ https://cfri.podbean.com/e/katie-video/#comments Mon, 16 Dec 2024 16:08:14 -0800 cfri.podbean.com/6388e0b7-f233-3571-825c-51931db2f0cb In this podcast, Katie Larson Ode, MD, Pediatric Endocrinology and Diabetes, discusses cystic fibrosis related diabetes (CFRD) which is the most common non-pulmonary complication among people with cystic fibrosis (CF). Dr. Larson Ode offers a better understanding of CFRD as this form of diabetes is unique to CF and is different from type 1 and type 2 diabetes. Dr. Larson Ode also shares the latest studies on how cystic fibrosis transmembrane conductance regulator (CFTR) corrective therapies could treat CFRD. This presentation was recorded at CFRI’s 2024 CF Adult Retreat.

Click here to donate to CFRI and support the cystic fibrosis community worldwide: https://cfri.app.neoncrm.com/forms/donation

CF Community Voices is made possible through support from Viatris, Vertex Pharmaceuticals, and Gilead Sciences.

]]> In this podcast, Katie Larson Ode, MD, Pediatric Endocrinology and Diabetes, discusses cystic fibrosis related diabetes (CFRD) which is the most common non-pulmonary complication among people with cystic fibrosis (CF). Dr. Larson Ode offers a better understanding of CFRD as this form of diabetes is unique to CF and is different from type 1 and type 2 diabetes. Dr. Larson Ode also shares the latest studies on how cystic fibrosis transmembrane conductance regulator (CFTR) corrective therapies could treat CFRD. This presentation was recorded at CFRI’s 2024 CF Adult Retreat.

Click here to donate to CFRI and support the cystic fibrosis community worldwide: https://cfri.app.neoncrm.com/forms/donation

CF Community Voices is made possible through support from Viatris, Vertex Pharmaceuticals, and Gilead Sciences.

]]> false No 2539 470 full Pancreatic Disease and CFRT Modulators: Dr. Katie Larson Ode (Audio) Pancreatic Disease and CFRT Modulators: Dr. Katie Larson Ode (Audio) https://cfri.podbean.com/e/katie-audio/ https://cfri.podbean.com/e/katie-audio/#comments Mon, 16 Dec 2024 16:08:02 -0800 cfri.podbean.com/c390ae6f-3d91-3c50-a33d-1a246eb6fd1e In this podcast, Katie Larson Ode, MD, Pediatric Endocrinology and Diabetes, discusses cystic fibrosis related diabetes (CFRD) which is the most common non-pulmonary complication among people with cystic fibrosis (CF). Dr. Larson Ode offers a better understanding of CFRD as this form of diabetes is unique to CF and is different from type 1 and type 2 diabetes. Dr. Larson Ode also shares the latest studies on how cystic fibrosis transmembrane conductance regulator (CFTR) corrective therapies could treat CFRD. This presentation was recorded at CFRI’s 2024 CF Adult Retreat.

Click here to donate to CFRI and support the cystic fibrosis community worldwide: https://cfri.app.neoncrm.com/forms/donation

CF Community Voices is made possible through support from Viatris, Vertex Pharmaceuticals, and Gilead Sciences.

]]> In this podcast, Katie Larson Ode, MD, Pediatric Endocrinology and Diabetes, discusses cystic fibrosis related diabetes (CFRD) which is the most common non-pulmonary complication among people with cystic fibrosis (CF). Dr. Larson Ode offers a better understanding of CFRD as this form of diabetes is unique to CF and is different from type 1 and type 2 diabetes. Dr. Larson Ode also shares the latest studies on how cystic fibrosis transmembrane conductance regulator (CFTR) corrective therapies could treat CFRD. This presentation was recorded at CFRI’s 2024 CF Adult Retreat.

Click here to donate to CFRI and support the cystic fibrosis community worldwide: https://cfri.app.neoncrm.com/forms/donation

CF Community Voices is made possible through support from Viatris, Vertex Pharmaceuticals, and Gilead Sciences.

]]> false No 2539 469 full Advancing Advocacy and Awareness - CFRI Advocacy Film 2024 Advancing Advocacy and Awareness - CFRI Advocacy Film 2024 https://cfri.podbean.com/e/2024-advocacy/ https://cfri.podbean.com/e/2024-advocacy/#comments Wed, 11 Dec 2024 11:46:23 -0800 cfri.podbean.com/64ef575d-af3f-3ca3-ba8a-31cee09d0ebc In less than three minutes, viewers will learn about cystic fibrosis (CF), the need for continued research to find a cure, the diversity of our community, and the many programs and services CFRI offers to the CF community. Please share with your networks to expand the impact of this film. Awareness is key to connect our community members to needed resources, while inspiring others to advocate for increased research funding and access to therapies.

]]> In less than three minutes, viewers will learn about cystic fibrosis (CF), the need for continued research to find a cure, the diversity of our community, and the many programs and services CFRI offers to the CF community. Please share with your networks to expand the impact of this film. Awareness is key to connect our community members to needed resources, while inspiring others to advocate for increased research funding and access to therapies.

]]> false No 147 468 full Updates in Constipation Management for CF: Lauren Kormelink, PharmD, BCACP (Video) Updates in Constipation Management for CF: Lauren Kormelink, PharmD, BCACP (Video) https://cfri.podbean.com/e/lauren-video/ https://cfri.podbean.com/e/lauren-video/#comments Tue, 10 Dec 2024 21:09:03 -0800 cfri.podbean.com/670514a7-094d-3661-b8c8-be838e9c37fc In this podcast, Lauren Kormelink, PharmD, BCACP, University of Kentucky Adult Cystic Fibrosis Center, discusses the very real challenges of constipation among people with cystic fibrosis (CF).Dr. Kormelink compares newer medications for treatment of constipation, reviews existing data for newer medications, and provides a first look at data (pending publication) that may expand the database and what we know about these medications. This presentation was recorded at CFRI’s 2024 CF Adult Retreat.

Click here to donate to CFRI and support the cystic fibrosis community worldwide: https://cfri.app.neoncrm.com/forms/donation

CF Community Voices is made possible through support from Viatris, Vertex Pharmaceuticals, and Gilead Sciences.

]]> In this podcast, Lauren Kormelink, PharmD, BCACP, University of Kentucky Adult Cystic Fibrosis Center, discusses the very real challenges of constipation among people with cystic fibrosis (CF).Dr. Kormelink compares newer medications for treatment of constipation, reviews existing data for newer medications, and provides a first look at data (pending publication) that may expand the database and what we know about these medications. This presentation was recorded at CFRI’s 2024 CF Adult Retreat.

Click here to donate to CFRI and support the cystic fibrosis community worldwide: https://cfri.app.neoncrm.com/forms/donation

CF Community Voices is made possible through support from Viatris, Vertex Pharmaceuticals, and Gilead Sciences.

]]> false No 2893 467 full Updates in Constipation Management for CF: Lauren Kormelink, PharmD, BCACP (Audio) Updates in Constipation Management for CF: Lauren Kormelink, PharmD, BCACP (Audio) https://cfri.podbean.com/e/lauren-audio/ https://cfri.podbean.com/e/lauren-audio/#comments Tue, 10 Dec 2024 21:08:49 -0800 cfri.podbean.com/54e6d5d7-1c23-39ec-b280-798eaf4b9f55 In this podcast, Lauren Kormelink, PharmD, BCACP, University of Kentucky Adult Cystic Fibrosis Center, discusses the very real challenges of constipation among people with cystic fibrosis (CF).Dr. Kormelink compares newer medications for treatment of constipation, reviews existing data for newer medications, and provides a first look at data (pending publication) that may expand the database and what we know about these medications. This presentation was recorded at CFRI’s 2024 CF Adult Retreat.

Click here to donate to CFRI and support the cystic fibrosis community worldwide: https://cfri.app.neoncrm.com/forms/donation

CF Community Voices is made possible through support from Viatris, Vertex Pharmaceuticals, and Gilead Sciences.

]]> In this podcast, Lauren Kormelink, PharmD, BCACP, University of Kentucky Adult Cystic Fibrosis Center, discusses the very real challenges of constipation among people with cystic fibrosis (CF).Dr. Kormelink compares newer medications for treatment of constipation, reviews existing data for newer medications, and provides a first look at data (pending publication) that may expand the database and what we know about these medications. This presentation was recorded at CFRI’s 2024 CF Adult Retreat.

Click here to donate to CFRI and support the cystic fibrosis community worldwide: https://cfri.app.neoncrm.com/forms/donation

CF Community Voices is made possible through support from Viatris, Vertex Pharmaceuticals, and Gilead Sciences.

]]> false No 2893 466 full Renal Challenges in Aging with Cystic Fibrosis: Alexandra “Xan” C.H. Nowakowski, PhD, MPH (Video) Renal Challenges in Aging with Cystic Fibrosis: Alexandra “Xan” C.H. Nowakowski, PhD, MPH (Video) https://cfri.podbean.com/e/xan-video/ https://cfri.podbean.com/e/xan-video/#comments Tue, 03 Dec 2024 08:46:36 -0800 cfri.podbean.com/41bb7f30-3926-3d37-bf6a-62c1cdcad24b In this podcast, Alexandra “Xan” C.H. Nowakowski, PhD, MPH, and Associate Professor at Florida State University College of Medicine, discusses renal challenges emerging among aging adults with cystic fibrosis (CF).Dr. Nowakowski helps identify key renal complications of CF, reviews CF and kidney health, and presents best practices for CF nephrology care, as well as areas that require improvement and further study. This presentation was recorded at CFRI’s 2024 CF Adult Retreat. 

CF Community Voices is made possible through support from Viatris, Vertex Pharmaceuticals, and Gilead Sciences.

]]> In this podcast, Alexandra “Xan” C.H. Nowakowski, PhD, MPH, and Associate Professor at Florida State University College of Medicine, discusses renal challenges emerging among aging adults with cystic fibrosis (CF).Dr. Nowakowski helps identify key renal complications of CF, reviews CF and kidney health, and presents best practices for CF nephrology care, as well as areas that require improvement and further study. This presentation was recorded at CFRI’s 2024 CF Adult Retreat. 

CF Community Voices is made possible through support from Viatris, Vertex Pharmaceuticals, and Gilead Sciences.

]]> false No 3437 465 full Renal Challenges in Aging with Cystic Fibrosis: Alexandra “Xan” C.H. Nowakowski, PhD, MPH (Audio) Renal Challenges in Aging with Cystic Fibrosis: Alexandra “Xan” C.H. Nowakowski, PhD, MPH (Audio) https://cfri.podbean.com/e/xan-audio/ https://cfri.podbean.com/e/xan-audio/#comments Tue, 03 Dec 2024 08:46:24 -0800 cfri.podbean.com/21b4260d-562c-3ac2-93d7-743a1ba564cb In this podcast, Alexandra “Xan” C.H. Nowakowski, PhD, MPH, and Associate Professor at Florida State University College of Medicine, discusses renal challenges emerging among aging adults with cystic fibrosis (CF). Dr. Nowakowski helps identify key renal complications of CF, reviews CF and kidney health, and presents best practices for CF nephrology care, as well as areas that require improvement and further study. This presentation was recorded at CFRI’s 2024 CF Adult Retreat. 

CF Community Voices is made possible through support from Viatris, Vertex Pharmaceuticals, and Gilead Sciences.

]]> In this podcast, Alexandra “Xan” C.H. Nowakowski, PhD, MPH, and Associate Professor at Florida State University College of Medicine, discusses renal challenges emerging among aging adults with cystic fibrosis (CF). Dr. Nowakowski helps identify key renal complications of CF, reviews CF and kidney health, and presents best practices for CF nephrology care, as well as areas that require improvement and further study. This presentation was recorded at CFRI’s 2024 CF Adult Retreat. 

CF Community Voices is made possible through support from Viatris, Vertex Pharmaceuticals, and Gilead Sciences.

]]> false No 3437 464 full Understanding CF & Men’s Sexual and Reproductive Health - Georgia Brown and Reuben Samuels (Video) Understanding CF & Men’s Sexual and Reproductive Health - Georgia Brown and Reuben Samuels (Video) https://cfri.podbean.com/e/mens-sexual-health-video/ https://cfri.podbean.com/e/mens-sexual-health-video/#comments Tue, 26 Nov 2024 14:42:33 -0800 cfri.podbean.com/280eec37-be5c-36b8-bbf8-c430a5a9d48f Cystic fibrosis and men’s sexual and reproductive health has long been a neglected topic that must be addressed as part of one’s total health. In this podcast, Reuben Samuels and Georgia Brown share vital information from statistical and personal perspectives. Reuben is President of Breathe Easy International, a Certified Crisis Interventionist and CF patient and lung transplant recipient. Georgia, also living with CF, co-led the Cystic Fibrosis Sexual and Reproductive Collaborative (CFReSHC), contributed to a Sexual and Reproductive Health resource guide written by CF patients, and volunteers on CFRI’s Adult Advisory and Retreat Committees. 

CF Community Voices is made possible through support from Viatris, Vertex Pharmaceuticals, and Gilead Sciences.

]]> Cystic fibrosis and men’s sexual and reproductive health has long been a neglected topic that must be addressed as part of one’s total health. In this podcast, Reuben Samuels and Georgia Brown share vital information from statistical and personal perspectives. Reuben is President of Breathe Easy International, a Certified Crisis Interventionist and CF patient and lung transplant recipient. Georgia, also living with CF, co-led the Cystic Fibrosis Sexual and Reproductive Collaborative (CFReSHC), contributed to a Sexual and Reproductive Health resource guide written by CF patients, and volunteers on CFRI’s Adult Advisory and Retreat Committees. 

CF Community Voices is made possible through support from Viatris, Vertex Pharmaceuticals, and Gilead Sciences.

]]> false No 1552 463 full Understanding CF & Men’s Sexual and Reproductive Health - Georgia Brown and Reuben Samuels (Audio) Understanding CF & Men’s Sexual and Reproductive Health - Georgia Brown and Reuben Samuels (Audio) https://cfri.podbean.com/e/mens-sexual-health-audio/ https://cfri.podbean.com/e/mens-sexual-health-audio/#comments Tue, 26 Nov 2024 14:42:18 -0800 cfri.podbean.com/2df722b6-7765-39ce-9df5-837ae505f6d6 Cystic fibrosis and men’s sexual and reproductive health has long been a neglected topic that must be addressed as part of one’s total health. In this podcast, Reuben Samuels and Georgia Brown share vital information from statistical and personal perspectives. Reuben is President of Breathe Easy International, a Certified Crisis Interventionist and CF patient and lung transplant recipient. Georgia, also living with CF, co-led the Cystic Fibrosis Sexual and Reproductive Collaborative (CFReSHC), contributed to a Sexual and Reproductive Health resource guide written by CF patients, and volunteers on CFRI’s Adult Advisory and Retreat Committees. 

CF Community Voices is made possible through support from Viatris, Vertex Pharmaceuticals, and Gilead Sciences.

]]> Cystic fibrosis and men’s sexual and reproductive health has long been a neglected topic that must be addressed as part of one’s total health. In this podcast, Reuben Samuels and Georgia Brown share vital information from statistical and personal perspectives. Reuben is President of Breathe Easy International, a Certified Crisis Interventionist and CF patient and lung transplant recipient. Georgia, also living with CF, co-led the Cystic Fibrosis Sexual and Reproductive Collaborative (CFReSHC), contributed to a Sexual and Reproductive Health resource guide written by CF patients, and volunteers on CFRI’s Adult Advisory and Retreat Committees. 

CF Community Voices is made possible through support from Viatris, Vertex Pharmaceuticals, and Gilead Sciences.

]]> false No 1552 462 full 10 Tips for Traveling with Disease & Illness by Full Time Traveler with CF, Caleigh Haber-Takayama (Video) 10 Tips for Traveling with Disease & Illness by Full Time Traveler with CF, Caleigh Haber-Takayama (Video) https://cfri.podbean.com/e/caleigh-video/ https://cfri.podbean.com/e/caleigh-video/#comments Wed, 20 Nov 2024 11:37:11 -0800 cfri.podbean.com/523d067f-42e3-3bca-866b-cfee47c7e63c Caleigh Haber-Takayama is living with cystic fibrosis, has undergone two double lung transplants and three open heart surgeries, and is a full-time traveler and nomad having traveled North America, Asia, and Europe. Learn imperative travel tips in how to prepare for upcoming travel, stay prepared while on your trip, and know what to do if something comes up while on your trip. Let Caleigh’s experience and tips inspire you! This podcast was recorded at CFRI’s CF Adult Retreat.

CF Community Voices is made possible through support from Viatris, Vertex Pharmaceuticals, and Gilead Sciences.

]]> Caleigh Haber-Takayama is living with cystic fibrosis, has undergone two double lung transplants and three open heart surgeries, and is a full-time traveler and nomad having traveled North America, Asia, and Europe. Learn imperative travel tips in how to prepare for upcoming travel, stay prepared while on your trip, and know what to do if something comes up while on your trip. Let Caleigh’s experience and tips inspire you! This podcast was recorded at CFRI’s CF Adult Retreat.

CF Community Voices is made possible through support from Viatris, Vertex Pharmaceuticals, and Gilead Sciences.

]]> false No 1869 461 full 10 Tips for Traveling with Disease & Illness by Full Time Traveler with CF, Caleigh Haber-Takayama (Audio) 10 Tips for Traveling with Disease & Illness by Full Time Traveler with CF, Caleigh Haber-Takayama (Audio) https://cfri.podbean.com/e/caleigh-audio/ https://cfri.podbean.com/e/caleigh-audio/#comments Wed, 20 Nov 2024 11:36:57 -0800 cfri.podbean.com/43d0f2ff-6008-39d9-ac74-0957cb976416 Caleigh Haber-Takayama is living with cystic fibrosis, has undergone two double lung transplants and three open heart surgeries, and is a full-time traveler and nomad having traveled North America, Asia, and Europe. Learn imperative travel tips in how to prepare for upcoming travel, stay prepared while on your trip, and know what to do if something comes up while on your trip. Let Caleigh’s experience and tips inspire you! This podcast was recorded at CFRI’s CF Adult Retreat.

CF Community Voices is made possible through support from Viatris, Vertex Pharmaceuticals, and Gilead Sciences.

]]> Caleigh Haber-Takayama is living with cystic fibrosis, has undergone two double lung transplants and three open heart surgeries, and is a full-time traveler and nomad having traveled North America, Asia, and Europe. Learn imperative travel tips in how to prepare for upcoming travel, stay prepared while on your trip, and know what to do if something comes up while on your trip. Let Caleigh’s experience and tips inspire you! This podcast was recorded at CFRI’s CF Adult Retreat.

CF Community Voices is made possible through support from Viatris, Vertex Pharmaceuticals, and Gilead Sciences.

]]> false No 1869 460 full CF and Cardiovascular Disease: Time to Listen to Your Heart! Alex Despotes, MD (Video) CF and Cardiovascular Disease: Time to Listen to Your Heart! Alex Despotes, MD (Video) https://cfri.podbean.com/e/alex-d-video/ https://cfri.podbean.com/e/alex-d-video/#comments Wed, 13 Nov 2024 12:28:23 -0800 cfri.podbean.com/c314fcdc-ac75-3af1-863e-0259ec9c650a This podcast was recorded at CFRI’s 2024 CF Adult Retreat. Dr. Alex Despotes, Pulmonary/Critical Care Medicine, and Pediatric Pulmonology at the University of North Carolina at Chapel Hill, and a CFRI Patrick Nash Fellow, presented an overview of heart disease and its growing prevalence among those with CF, including risk factors, symptoms, and prevention.

CF Community Voices is made possible through support from Viatris, Vertex Pharmaceuticals, and Gilead Sciences.

]]> This podcast was recorded at CFRI’s 2024 CF Adult Retreat. Dr. Alex Despotes, Pulmonary/Critical Care Medicine, and Pediatric Pulmonology at the University of North Carolina at Chapel Hill, and a CFRI Patrick Nash Fellow, presented an overview of heart disease and its growing prevalence among those with CF, including risk factors, symptoms, and prevention.

CF Community Voices is made possible through support from Viatris, Vertex Pharmaceuticals, and Gilead Sciences.

]]> false No 3467 459 full CF and Cardiovascular Disease: Time to Listen to Your Heart! Alex Despotes, MD (Audio) CF and Cardiovascular Disease: Time to Listen to Your Heart! Alex Despotes, MD (Audio) https://cfri.podbean.com/e/alex-d-audio/ https://cfri.podbean.com/e/alex-d-audio/#comments Wed, 13 Nov 2024 12:28:12 -0800 cfri.podbean.com/ad622217-c41b-31ed-a0af-820d30d5fd68 This podcast was recorded at CFRI’s 2024 CF Adult Retreat. Dr. Alex Despotes, Pulmonary/Critical Care Medicine, and Pediatric Pulmonology at the University of North Carolina at Chapel Hill, and a CFRI Patrick Nash Fellow, presented an overview of heart disease and its growing prevalence among those with CF, including risk factors, symptoms, and prevention.

CF Community Voices is made possible through support from Viatris, Vertex Pharmaceuticals, and Gilead Sciences.

]]> This podcast was recorded at CFRI’s 2024 CF Adult Retreat. Dr. Alex Despotes, Pulmonary/Critical Care Medicine, and Pediatric Pulmonology at the University of North Carolina at Chapel Hill, and a CFRI Patrick Nash Fellow, presented an overview of heart disease and its growing prevalence among those with CF, including risk factors, symptoms, and prevention.

CF Community Voices is made possible through support from Viatris, Vertex Pharmaceuticals, and Gilead Sciences.

]]> false No 3467 458 full Therapeutic Strategies to Address Medical Trauma in the CF Community - Kate Yablonsky, LCSW (Video) Therapeutic Strategies to Address Medical Trauma in the CF Community - Kate Yablonsky, LCSW (Video) https://cfri.podbean.com/e/medical-trauma-video/ https://cfri.podbean.com/e/medical-trauma-video/#comments Wed, 16 Oct 2024 08:36:51 -0700 cfri.podbean.com/741f0591-409a-35d9-a1a7-adc0d3294922 Medical trauma is experienced by many individuals with cystic fibrosis - both children and adults. Kate Yablonsky, LCSW, social worker at the Stanford Adult CF Center, reviews the signs and symptoms of medical trauma, and discusses specific therapeutic models that have been found to be helpful for people with CF and their loved ones to effectively process and integrate these experiences.

CF Community Voices is made possible through support from Viatris, Vertex Pharmaceuticals, and Gilead Sciences.

]]> Medical trauma is experienced by many individuals with cystic fibrosis - both children and adults. Kate Yablonsky, LCSW, social worker at the Stanford Adult CF Center, reviews the signs and symptoms of medical trauma, and discusses specific therapeutic models that have been found to be helpful for people with CF and their loved ones to effectively process and integrate these experiences.

CF Community Voices is made possible through support from Viatris, Vertex Pharmaceuticals, and Gilead Sciences.

]]> false No 3854 457 full Therapeutic Strategies to Address Medical Trauma in the CF Community - Kate Yablonsky, LCSW (Audio) Therapeutic Strategies to Address Medical Trauma in the CF Community - Kate Yablonsky, LCSW (Audio) https://cfri.podbean.com/e/medical-trauma-audio/ https://cfri.podbean.com/e/medical-trauma-audio/#comments Wed, 16 Oct 2024 08:36:37 -0700 cfri.podbean.com/276c65c9-32e1-3ad4-bdf0-c6aebfd8d66b Medical trauma is experienced by many individuals with cystic fibrosis - both children and adults. Kate Yablonsky, LCSW, social worker at the Stanford Adult CF Center, reviews the signs and symptoms of medical trauma, and discusses specific therapeutic models that have been found to be helpful for people with CF and their loved ones to effectively process and integrate these experiences.

CF Community Voices is made possible through support from Viatris, Vertex Pharmaceuticals, and Gilead Sciences.

]]> Medical trauma is experienced by many individuals with cystic fibrosis - both children and adults. Kate Yablonsky, LCSW, social worker at the Stanford Adult CF Center, reviews the signs and symptoms of medical trauma, and discusses specific therapeutic models that have been found to be helpful for people with CF and their loved ones to effectively process and integrate these experiences.

CF Community Voices is made possible through support from Viatris, Vertex Pharmaceuticals, and Gilead Sciences.

]]> false No 3854 456 full Panel: Advocacy, Access and Health Equity in Cystic Fibrosis (Video) Panel: Advocacy, Access and Health Equity in Cystic Fibrosis (Video) https://cfri.podbean.com/e/advocacy-panel-video/ https://cfri.podbean.com/e/advocacy-panel-video/#comments Wed, 09 Oct 2024 09:31:13 -0700 cfri.podbean.com/f5d5e52f-b2cd-3fc6-b358-a1ee538b94f6 In this panel session, three adults with CF - Rachel Alder, Jaelyn Cooper, MHA, and Abhijit Tirumala – as well as a mother of an adult son with CF, Alicia Maciel, MBA, share their personal experiences and insights navigating bias to develop productive partnerships with care teams and fellow community members so as to improve medical care and quality of life. Moderated by Kimberly Morse, MSW, LCSW, panelists provide examples of optimal care and interactions, while stressing the importance of self-advocacy and community engagement. This presentation was part of CFRI's 37th National CF Education Conference.

CFRI's 37th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Viatris, Gilead Sciences, AbbVie, and the Boomer Esiason Foundation.

]]> In this panel session, three adults with CF - Rachel Alder, Jaelyn Cooper, MHA, and Abhijit Tirumala – as well as a mother of an adult son with CF, Alicia Maciel, MBA, share their personal experiences and insights navigating bias to develop productive partnerships with care teams and fellow community members so as to improve medical care and quality of life. Moderated by Kimberly Morse, MSW, LCSW, panelists provide examples of optimal care and interactions, while stressing the importance of self-advocacy and community engagement. This presentation was part of CFRI's 37th National CF Education Conference.

CFRI's 37th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Viatris, Gilead Sciences, AbbVie, and the Boomer Esiason Foundation.

]]> false No 3095 455 full Panel: Advocacy, Access and Health Equity in Cystic Fibrosis (Audio) Panel: Advocacy, Access and Health Equity in Cystic Fibrosis (Audio) https://cfri.podbean.com/e/advocacy-panel-audio/ https://cfri.podbean.com/e/advocacy-panel-audio/#comments Wed, 09 Oct 2024 09:30:57 -0700 cfri.podbean.com/ebe4a0c5-59b5-35ef-b519-9c264e347cf7 In this panel session, three adults with CF - Rachel Alder, Jaelyn Cooper, MHA, and Abhijit Tirumala – as well as a mother of an adult son with CF, Alicia Maciel, MBA, share their personal experiences and insights navigating bias to develop productive partnerships with care teams and fellow community members so as to improve medical care and quality of life. Moderated by Kimberly Morse, MSW, LCSW, panelists provide examples of optimal care and interactions, while stressing the importance of self-advocacy and community engagement. This presentation was part of CFRI's 37th National CF Education Conference.

CFRI's 37th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Viatris, Gilead Sciences, AbbVie, and the Boomer Esiason Foundation.

]]> In this panel session, three adults with CF - Rachel Alder, Jaelyn Cooper, MHA, and Abhijit Tirumala – as well as a mother of an adult son with CF, Alicia Maciel, MBA, share their personal experiences and insights navigating bias to develop productive partnerships with care teams and fellow community members so as to improve medical care and quality of life. Moderated by Kimberly Morse, MSW, LCSW, panelists provide examples of optimal care and interactions, while stressing the importance of self-advocacy and community engagement. This presentation was part of CFRI's 37th National CF Education Conference.

CFRI's 37th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Viatris, Gilead Sciences, AbbVie, and the Boomer Esiason Foundation.

]]> false No 3095 454 full Living Proof: Nearly Seventy Years with Cystic Fibrosis - Luanne McKinnon, PhD (Video) Living Proof: Nearly Seventy Years with Cystic Fibrosis - Luanne McKinnon, PhD (Video) https://cfri.podbean.com/e/luanne-video/ https://cfri.podbean.com/e/luanne-video/#comments Wed, 09 Oct 2024 09:30:42 -0700 cfri.podbean.com/1a771163-39fa-39fc-9c29-2790cc784153 Dr. Luanne McKinnon, an adult with CF who has had a rich career in the visual arts for over forty-five years, recounts in colorful detail her life with CF, from a diagnosis in 1969 through the arc of CF care that, like a travel log, leads us from Texas to Europe to New York City, Scotland and France, then New Mexico to Palo Alto. Dr. McKinnon also shares an excerpt from her memoir-in-progress entitled, Pneuma, Latin for soul and breath. This presentation was part of CFRI's 37th National CF Education Conference.

CFRI's 37th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Viatris, Gilead Sciences, AbbVie, and the Boomer Esiason Foundation.

]]> Dr. Luanne McKinnon, an adult with CF who has had a rich career in the visual arts for over forty-five years, recounts in colorful detail her life with CF, from a diagnosis in 1969 through the arc of CF care that, like a travel log, leads us from Texas to Europe to New York City, Scotland and France, then New Mexico to Palo Alto. Dr. McKinnon also shares an excerpt from her memoir-in-progress entitled, Pneuma, Latin for soul and breath. This presentation was part of CFRI's 37th National CF Education Conference.

CFRI's 37th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Viatris, Gilead Sciences, AbbVie, and the Boomer Esiason Foundation.

]]> false No 2645 453 full Living Proof: Nearly Seventy Years with Cystic Fibrosis - Luanne McKinnon, PhD (Audio) Living Proof: Nearly Seventy Years with Cystic Fibrosis - Luanne McKinnon, PhD (Audio) https://cfri.podbean.com/e/luanne-audio/ https://cfri.podbean.com/e/luanne-audio/#comments Wed, 09 Oct 2024 09:30:29 -0700 cfri.podbean.com/845c390c-f1e5-3280-a851-51d2b5d9df50 Dr. Luanne McKinnon, an adult with CF who has had a rich career in the visual arts for over forty-five years, recounts in colorful detail her life with CF, from a diagnosis in 1969 through the arc of CF care that, like a travel log, leads us from Texas to Europe to New York City, Scotland and France, then New Mexico to Palo Alto. Dr. McKinnon also shares an excerpt from her memoir-in-progress entitled, Pneuma, Latin for soul and breath. This presentation was part of CFRI's 37th National CF Education Conference.

CFRI's 37th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Viatris, Gilead Sciences, AbbVie, and the Boomer Esiason Foundation.

]]> Dr. Luanne McKinnon, an adult with CF who has had a rich career in the visual arts for over forty-five years, recounts in colorful detail her life with CF, from a diagnosis in 1969 through the arc of CF care that, like a travel log, leads us from Texas to Europe to New York City, Scotland and France, then New Mexico to Palo Alto. Dr. McKinnon also shares an excerpt from her memoir-in-progress entitled, Pneuma, Latin for soul and breath. This presentation was part of CFRI's 37th National CF Education Conference.

CFRI's 37th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Viatris, Gilead Sciences, AbbVie, and the Boomer Esiason Foundation.

]]> false No 2645 452 full Sexual and Reproductive Health in CF - Natalie E. West, MD, MPH (Video) Sexual and Reproductive Health in CF - Natalie E. West, MD, MPH (Video) https://cfri.podbean.com/e/natalie-west-video/ https://cfri.podbean.com/e/natalie-west-video/#comments Wed, 02 Oct 2024 10:59:21 -0700 cfri.podbean.com/99c2593c-83ca-3509-b888-666ada6e2b53 Dr. Natalie West, Assistant Professor of Medicine of Pulmonary and Critical Care Medicine at Johns Hopkins University and Associate Program Director of the Adult CF Program, addresses a wide range of sexual and reproductive health topics - including puberty, transgender and gender nonbinary identities, contraception, cyclical hemoptysis, fertility, contraception, and parenthood - that specifically affect people with CF. Her presentation highlights the need to optimize sexual and reproductive health care as the face of CF changes. This presentation was part of CFRI's 37th National CF Education Conference.

CFRI's 37th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Viatris, Gilead Sciences, AbbVie, and the Boomer Esiason Foundation.

]]> Dr. Natalie West, Assistant Professor of Medicine of Pulmonary and Critical Care Medicine at Johns Hopkins University and Associate Program Director of the Adult CF Program, addresses a wide range of sexual and reproductive health topics - including puberty, transgender and gender nonbinary identities, contraception, cyclical hemoptysis, fertility, contraception, and parenthood - that specifically affect people with CF. Her presentation highlights the need to optimize sexual and reproductive health care as the face of CF changes. This presentation was part of CFRI's 37th National CF Education Conference.

CFRI's 37th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Viatris, Gilead Sciences, AbbVie, and the Boomer Esiason Foundation.

]]> false No 2225 451 full Sexual and Reproductive Health in CF - Natalie E. West, MD, MPH (Audio) Sexual and Reproductive Health in CF - Natalie E. West, MD, MPH (Audio) https://cfri.podbean.com/e/natalie-west-audio/ https://cfri.podbean.com/e/natalie-west-audio/#comments Wed, 02 Oct 2024 10:59:08 -0700 cfri.podbean.com/a91d85ad-3bac-331d-ae20-b749024e1f31 Dr. Natalie West, Assistant Professor of Medicine of Pulmonary and Critical Care Medicine at Johns Hopkins University and Associate Program Director of the Adult CF Program, addresses a wide range of sexual and reproductive health topics - including puberty, transgender and gender nonbinary identities, contraception, cyclical hemoptysis, fertility, contraception, and parenthood - that specifically affect people with CF. Her presentation highlights the need to optimize sexual and reproductive health care as the face of CF changes. This presentation was part of CFRI's 37th National CF Education Conference.

CFRI's 37th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Viatris, Gilead Sciences, AbbVie, and the Boomer Esiason Foundation.

]]> Dr. Natalie West, Assistant Professor of Medicine of Pulmonary and Critical Care Medicine at Johns Hopkins University and Associate Program Director of the Adult CF Program, addresses a wide range of sexual and reproductive health topics - including puberty, transgender and gender nonbinary identities, contraception, cyclical hemoptysis, fertility, contraception, and parenthood - that specifically affect people with CF. Her presentation highlights the need to optimize sexual and reproductive health care as the face of CF changes. This presentation was part of CFRI's 37th National CF Education Conference.

CFRI's 37th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Viatris, Gilead Sciences, AbbVie, and the Boomer Esiason Foundation.

]]> false No 2225 450 full The Power of Passion - Nicholas Kelly, MS, RD, LD (Video) The Power of Passion - Nicholas Kelly, MS, RD, LD (Video) https://cfri.podbean.com/e/nick-kelly-video/ https://cfri.podbean.com/e/nick-kelly-video/#comments Wed, 02 Oct 2024 10:58:53 -0700 cfri.podbean.com/da19ed83-de83-3bfd-a617-9df10c401337 Nicholas Kelly, adult with CF, dietitian, author, artist, motivational speaker, and advocate, shares his experiences living with a chronic disease, what it takes to fight despite obstacles, and thrive in the face of adversity. He talks about his passion for shining a light on research, addressing inadequacies, advocating for the community, and driving the mission to make CF stand for "Cure Found." This presentation was part of CFRI's 37th National CF Education Conference.

CFRI's 37th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Viatris, Gilead Sciences, AbbVie, and the Boomer Esiason Foundation.

]]> Nicholas Kelly, adult with CF, dietitian, author, artist, motivational speaker, and advocate, shares his experiences living with a chronic disease, what it takes to fight despite obstacles, and thrive in the face of adversity. He talks about his passion for shining a light on research, addressing inadequacies, advocating for the community, and driving the mission to make CF stand for "Cure Found." This presentation was part of CFRI's 37th National CF Education Conference.

CFRI's 37th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Viatris, Gilead Sciences, AbbVie, and the Boomer Esiason Foundation.

]]> false No 1564 449 full The Power of Passion - Nicholas Kelly, MS, RD, LD (Audio) The Power of Passion - Nicholas Kelly, MS, RD, LD (Audio) https://cfri.podbean.com/e/nick-kelly-audio/ https://cfri.podbean.com/e/nick-kelly-audio/#comments Wed, 02 Oct 2024 10:58:35 -0700 cfri.podbean.com/14817749-6217-3358-91f1-059809b8583f Nicholas Kelly, adult with CF, dietitian, author, artist, motivational speaker, and advocate, shares his experiences living with a chronic disease, what it takes to fight despite obstacles, and thrive in the face of adversity. He talks about his passion for shining a light on research, addressing inadequacies, advocating for the community, and driving the mission to make CF stand for "Cure Found." This presentation was part of CFRI's 37th National CF Education Conference.

CFRI's 37th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Viatris, Gilead Sciences, AbbVie, and the Boomer Esiason Foundation.

]]> Nicholas Kelly, adult with CF, dietitian, author, artist, motivational speaker, and advocate, shares his experiences living with a chronic disease, what it takes to fight despite obstacles, and thrive in the face of adversity. He talks about his passion for shining a light on research, addressing inadequacies, advocating for the community, and driving the mission to make CF stand for "Cure Found." This presentation was part of CFRI's 37th National CF Education Conference.

CFRI's 37th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Viatris, Gilead Sciences, AbbVie, and the Boomer Esiason Foundation.

]]> false No 1564 448 full Book Reading: Love, Courage and Miracles - Robin Modlin, MA (Video) Book Reading: Love, Courage and Miracles - Robin Modlin, MA (Video) https://cfri.podbean.com/e/robin-video/ https://cfri.podbean.com/e/robin-video/#comments Wed, 25 Sep 2024 11:24:04 -0700 cfri.podbean.com/f592f835-9d7e-30e6-bd61-d713a9b5bcf6 Robin Modlin, mother of an adult daughter with CF, artist and writer, reads excerpts from her book “Love, Courage and Miracles.” The autobiographic book chronicles Robin’s daughter Anna's life-limiting prognosis, the challenges of living with cystic fibrosis, and Anna's miracle resurrection through a double lung transplant. It is a testament to the unbreakable bond between a mother and daughter and the transformative power of love, acceptance, and hope. This presentation was part of CFRI's 37th National CF Education Conference.

CFRI's 37th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Viatris, Gilead Sciences, AbbVie, and the Boomer Esiason Foundation.

]]> Robin Modlin, mother of an adult daughter with CF, artist and writer, reads excerpts from her book “Love, Courage and Miracles.” The autobiographic book chronicles Robin’s daughter Anna's life-limiting prognosis, the challenges of living with cystic fibrosis, and Anna's miracle resurrection through a double lung transplant. It is a testament to the unbreakable bond between a mother and daughter and the transformative power of love, acceptance, and hope. This presentation was part of CFRI's 37th National CF Education Conference.

CFRI's 37th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Viatris, Gilead Sciences, AbbVie, and the Boomer Esiason Foundation.

]]> false No 2690 447 full Book Reading: Love, Courage and Miracles - Robin Modlin, MA (Audio) Book Reading: Love, Courage and Miracles - Robin Modlin, MA (Audio) https://cfri.podbean.com/e/robin-audio/ https://cfri.podbean.com/e/robin-audio/#comments Wed, 25 Sep 2024 11:23:54 -0700 cfri.podbean.com/ad5f0855-528b-3a53-90db-d097e234653b Robin Modlin, mother of an adult daughter with CF, artist and writer, reads excerpts from her book “Love, Courage and Miracles.” The autobiographic book chronicles Robin’s daughter Anna's life-limiting prognosis, the challenges of living with cystic fibrosis, and Anna's miracle resurrection through a double lung transplant. It is a testament to the unbreakable bond between a mother and daughter and the transformative power of love, acceptance, and hope. This presentation was part of CFRI's 37th National CF Education Conference.

CFRI's 37th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Viatris, Gilead Sciences, AbbVie, and the Boomer Esiason Foundation.

]]> Robin Modlin, mother of an adult daughter with CF, artist and writer, reads excerpts from her book “Love, Courage and Miracles.” The autobiographic book chronicles Robin’s daughter Anna's life-limiting prognosis, the challenges of living with cystic fibrosis, and Anna's miracle resurrection through a double lung transplant. It is a testament to the unbreakable bond between a mother and daughter and the transformative power of love, acceptance, and hope. This presentation was part of CFRI's 37th National CF Education Conference.

CFRI's 37th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Viatris, Gilead Sciences, AbbVie, and the Boomer Esiason Foundation.

]]> false No 2690 446 full Culture Shift: CF Lung Infections in the Modulator Era - Lucas Hoffman, MD, PhD (Video) Culture Shift: CF Lung Infections in the Modulator Era - Lucas Hoffman, MD, PhD (Video) https://cfri.podbean.com/e/lukevideo/ https://cfri.podbean.com/e/lukevideo/#comments Wed, 25 Sep 2024 11:23:41 -0700 cfri.podbean.com/0cde8e0c-c394-323f-a6e0-a81ba09c9d31 Dr. Lucas Hoffman, Professor of Pediatrics and Adjunct Professor of Microbiology at the University of Washington in Seattle and Seattle Children’s Hospital, reviews the microbes that are most frequently detected and other less common ones involved in CF airway infections. He discusses the benefits and risks of current treatments, especially antibiotics, the meaning of antibiotic resistance, and ongoing work to improve detection of infections in this new era. This presentation was part of CFRI's 37th National CF Education Conference.

CFRI's 37th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Viatris, Gilead Sciences, AbbVie, and the Boomer Esiason Foundation.

]]> Dr. Lucas Hoffman, Professor of Pediatrics and Adjunct Professor of Microbiology at the University of Washington in Seattle and Seattle Children’s Hospital, reviews the microbes that are most frequently detected and other less common ones involved in CF airway infections. He discusses the benefits and risks of current treatments, especially antibiotics, the meaning of antibiotic resistance, and ongoing work to improve detection of infections in this new era. This presentation was part of CFRI's 37th National CF Education Conference.

CFRI's 37th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Viatris, Gilead Sciences, AbbVie, and the Boomer Esiason Foundation.

]]> false No 2986 445 full Culture Shift: CF Lung Infections in the Modulator Era - Lucas Hoffman, MD, PhD (Audio) Culture Shift: CF Lung Infections in the Modulator Era - Lucas Hoffman, MD, PhD (Audio) https://cfri.podbean.com/e/luke-audio-1727288607/ https://cfri.podbean.com/e/luke-audio-1727288607/#comments Wed, 25 Sep 2024 11:23:27 -0700 cfri.podbean.com/87f16753-7e19-3db9-8a49-a9675353c10b Dr. Lucas Hoffman, Professor of Pediatrics and Adjunct Professor of Microbiology at the University of Washington in Seattle and Seattle Children’s Hospital, reviews the microbes that are most frequently detected and other less common ones involved in CF airway infections. He discusses the benefits and risks of current treatments, especially antibiotics, the meaning of antibiotic resistance, and ongoing work to improve detection of infections in this new era. This presentation was part of CFRI's 37th National CF Education Conference.

CFRI's 37th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Viatris, Gilead Sciences, AbbVie, and the Boomer Esiason Foundation.

]]> Dr. Lucas Hoffman, Professor of Pediatrics and Adjunct Professor of Microbiology at the University of Washington in Seattle and Seattle Children’s Hospital, reviews the microbes that are most frequently detected and other less common ones involved in CF airway infections. He discusses the benefits and risks of current treatments, especially antibiotics, the meaning of antibiotic resistance, and ongoing work to improve detection of infections in this new era. This presentation was part of CFRI's 37th National CF Education Conference.

CFRI's 37th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Viatris, Gilead Sciences, AbbVie, and the Boomer Esiason Foundation.

]]> false No 2987 444 full Phage Therapy for CF-Associated Infections - Benjamin Chan, PhD (Video) Phage Therapy for CF-Associated Infections - Benjamin Chan, PhD (Video) https://cfri.podbean.com/e/benjamin-chan-video/ https://cfri.podbean.com/e/benjamin-chan-video/#comments Wed, 18 Sep 2024 09:20:06 -0700 cfri.podbean.com/5d6e76ae-8954-37f5-b493-b94b2fbb85ad Dr. Benjamin Chan, Associate Research Scientist in the department of Ecology and Evolutionary Biology at Yale University, gives a comprehensive overview on bacteriophage (phage) therapy, the therapeutic administration of the bacteria killing viruses. He shares experiments and case studies that resulted in a significant decrease in production of targeted virulence factors in single-phage treated samples, a significant reduction in bacterial density in sputum, and significant increase in FEV1. This presentation was part of CFRI's 37th National CF Education Conference.

CFRI's 37th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Viatris, Gilead Sciences, AbbVie, and the Boomer Esiason Foundation.

]]> Dr. Benjamin Chan, Associate Research Scientist in the department of Ecology and Evolutionary Biology at Yale University, gives a comprehensive overview on bacteriophage (phage) therapy, the therapeutic administration of the bacteria killing viruses. He shares experiments and case studies that resulted in a significant decrease in production of targeted virulence factors in single-phage treated samples, a significant reduction in bacterial density in sputum, and significant increase in FEV1. This presentation was part of CFRI's 37th National CF Education Conference.

CFRI's 37th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Viatris, Gilead Sciences, AbbVie, and the Boomer Esiason Foundation.

]]> false No 1868 443 full Phage Therapy for CF-Associated Infections - Benjamin Chan, PhD (Audio) Phage Therapy for CF-Associated Infections - Benjamin Chan, PhD (Audio) https://cfri.podbean.com/e/benjamin-chan-audio/ https://cfri.podbean.com/e/benjamin-chan-audio/#comments Wed, 18 Sep 2024 09:19:52 -0700 cfri.podbean.com/eac4cafd-2e27-33d7-88e9-d30665f8f478 Dr. Benjamin Chan, Associate Research Scientist in the department of Ecology and Evolutionary Biology at Yale University, gives a comprehensive overview on bacteriophage (phage) therapy, the therapeutic administration of the bacteria killing viruses. He shares experiments and case studies that resulted in a significant decrease in production of targeted virulence factors in single-phage treated samples, a significant reduction in bacterial density in sputum, and significant increase in FEV1. This presentation was part of CFRI's 37th National CF Education Conference.

CFRI's 37th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Viatris, Gilead Sciences, AbbVie, and the Boomer Esiason Foundation.

]]> Dr. Benjamin Chan, Associate Research Scientist in the department of Ecology and Evolutionary Biology at Yale University, gives a comprehensive overview on bacteriophage (phage) therapy, the therapeutic administration of the bacteria killing viruses. He shares experiments and case studies that resulted in a significant decrease in production of targeted virulence factors in single-phage treated samples, a significant reduction in bacterial density in sputum, and significant increase in FEV1. This presentation was part of CFRI's 37th National CF Education Conference.

CFRI's 37th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Viatris, Gilead Sciences, AbbVie, and the Boomer Esiason Foundation.

]]> false No 1868 442 full Panel: Coping with Cancer and CF (Video) Panel: Coping with Cancer and CF (Video) https://cfri.podbean.com/e/panel-video/ https://cfri.podbean.com/e/panel-video/#comments Wed, 18 Sep 2024 09:19:30 -0700 cfri.podbean.com/e02fb0ae-91b6-34f2-ac0d-c9cfdb179ff1 In this panel session, three adults with CF - Elyse Elconin Goldberg, MA, Thomas Horal, and Colleen Lewis - share their personal experiences with diverse cancer diagnoses, while a sibling of an adult with CF – Christine Nash, MBA - describes her brother’s battle with pancreatic cancer. Moderated by Jean Hanley, MD, the discussion explores panelists’ insights and perspectives on detection and treatment, as well as the mental health implications of this dual diagnosis. This presentation was part of CFRI's 37th National CF Education Conference.

CFRI's 37th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Viatris, Gilead Sciences, AbbVie, and the Boomer Esiason Foundation.

]]> In this panel session, three adults with CF - Elyse Elconin Goldberg, MA, Thomas Horal, and Colleen Lewis - share their personal experiences with diverse cancer diagnoses, while a sibling of an adult with CF – Christine Nash, MBA - describes her brother’s battle with pancreatic cancer. Moderated by Jean Hanley, MD, the discussion explores panelists’ insights and perspectives on detection and treatment, as well as the mental health implications of this dual diagnosis. This presentation was part of CFRI's 37th National CF Education Conference.

CFRI's 37th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Viatris, Gilead Sciences, AbbVie, and the Boomer Esiason Foundation.

]]> false No 2412 441 full Panel: Coping with Cancer and CF (Audio) Panel: Coping with Cancer and CF (Audio) https://cfri.podbean.com/e/panel-audio/ https://cfri.podbean.com/e/panel-audio/#comments Wed, 18 Sep 2024 09:19:19 -0700 cfri.podbean.com/351c1ee5-e9ff-3ca7-b86c-811894fe0315 In this panel session, three adults with CF - Elyse Elconin Goldberg, MA, Thomas Horal, and Colleen Lewis - share their personal experiences with diverse cancer diagnoses, while a sibling of an adult with CF – Christine Nash, MBA - describes her brother’s battle with pancreatic cancer. Moderated by Jean Hanley, MD, the discussion explores panelists’ insights and perspectives on detection and treatment, as well as the mental health implications of this dual diagnosis. This presentation was part of CFRI's 37th National CF Education Conference.

CFRI's 37th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Viatris, Gilead Sciences, AbbVie, and the Boomer Esiason Foundation.

]]> In this panel session, three adults with CF - Elyse Elconin Goldberg, MA, Thomas Horal, and Colleen Lewis - share their personal experiences with diverse cancer diagnoses, while a sibling of an adult with CF – Christine Nash, MBA - describes her brother’s battle with pancreatic cancer. Moderated by Jean Hanley, MD, the discussion explores panelists’ insights and perspectives on detection and treatment, as well as the mental health implications of this dual diagnosis. This presentation was part of CFRI's 37th National CF Education Conference.

CFRI's 37th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Viatris, Gilead Sciences, AbbVie, and the Boomer Esiason Foundation.

]]> false No 2412 440 full Strategies to Address Medical Trauma - Samantha Johnson, MA, CCLS; Kate Yablonsky, LCSW (Video) Strategies to Address Medical Trauma - Samantha Johnson, MA, CCLS; Kate Yablonsky, LCSW (Video) https://cfri.podbean.com/e/kate-and-sam-video/ https://cfri.podbean.com/e/kate-and-sam-video/#comments Wed, 11 Sep 2024 10:42:22 -0700 cfri.podbean.com/9bf78750-dc55-37e8-983d-9c74b66999f8 Samantha Johnson, Certified Child Life Specialist III at Stanford Children's Hospital, and Kate Yablonsky, social worker at the Stanford Adult CF Center, review signs and symptoms of medical trauma and discuss strategies for people with CF and their loved ones across the lifespan to effectively process and integrate these experiences. The presentation highlights the significant impact on quality of life that this under-discussed but very real form of trauma can have. This presentation was part of CFRI's 37th National CF Education Conference.

CFRI's 37th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Viatris, Gilead Sciences, AbbVie, and the Boomer Esiason Foundation.

]]> Samantha Johnson, Certified Child Life Specialist III at Stanford Children's Hospital, and Kate Yablonsky, social worker at the Stanford Adult CF Center, review signs and symptoms of medical trauma and discuss strategies for people with CF and their loved ones across the lifespan to effectively process and integrate these experiences. The presentation highlights the significant impact on quality of life that this under-discussed but very real form of trauma can have. This presentation was part of CFRI's 37th National CF Education Conference.

CFRI's 37th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Viatris, Gilead Sciences, AbbVie, and the Boomer Esiason Foundation.

]]> false No 2351 439 full Strategies to Address Medical Trauma - Samantha Johnson, MA, CCLS; Kate Yablonsky, LCSW (Audio) Strategies to Address Medical Trauma - Samantha Johnson, MA, CCLS; Kate Yablonsky, LCSW (Audio) https://cfri.podbean.com/e/kate-and-sam-audio/ https://cfri.podbean.com/e/kate-and-sam-audio/#comments Wed, 11 Sep 2024 10:42:05 -0700 cfri.podbean.com/94e49aab-0129-3da5-a528-6e7b075c781a Samantha Johnson, Certified Child Life Specialist III at Stanford Children's Hospital, and Kate Yablonsky, social worker at the Stanford Adult CF Center, review signs and symptoms of medical trauma and discuss strategies for people with CF and their loved ones across the lifespan to effectively process and integrate these experiences. The presentation highlights the significant impact on quality of life that this under-discussed but very real form of trauma can have. This presentation was part of CFRI's 37th National CF Education Conference.

CFRI's 37th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Viatris, Gilead Sciences, AbbVie, and the Boomer Esiason Foundation.

]]> Samantha Johnson, Certified Child Life Specialist III at Stanford Children's Hospital, and Kate Yablonsky, social worker at the Stanford Adult CF Center, review signs and symptoms of medical trauma and discuss strategies for people with CF and their loved ones across the lifespan to effectively process and integrate these experiences. The presentation highlights the significant impact on quality of life that this under-discussed but very real form of trauma can have. This presentation was part of CFRI's 37th National CF Education Conference.

CFRI's 37th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Viatris, Gilead Sciences, AbbVie, and the Boomer Esiason Foundation.

]]> false No 2351 438 full Aging in the New Age of Cystic Fibrosis - Richard Moss, MD (Video) Aging in the New Age of Cystic Fibrosis - Richard Moss, MD (Video) https://cfri.podbean.com/e/dr-moss-video/ https://cfri.podbean.com/e/dr-moss-video/#comments Wed, 11 Sep 2024 10:41:49 -0700 cfri.podbean.com/d6b9b5ee-5173-3e6d-8f2b-eb429370b6be Dr. Rick Moss, Professor Emeritus of Pediatrics at Stanford University and former Director of the Stanford CF Center, presents an overview of the challenges of aging in the modulator era of CF, such as diabetes, a variety of cancers, cardiovascular disease, obesity, osteoporosis, and other health challenges. He also presents CFRI’s new programmatic efforts to raise expertise of caregivers for aging CF patients as well as providing accurate information and empowerment to all people with CF everywhere. This presentation was part of CFRI's 37th National CF Education Conference.

CFRI's 37th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Viatris, Gilead Sciences, AbbVie, and the Boomer Esiason Foundation.

]]> Dr. Rick Moss, Professor Emeritus of Pediatrics at Stanford University and former Director of the Stanford CF Center, presents an overview of the challenges of aging in the modulator era of CF, such as diabetes, a variety of cancers, cardiovascular disease, obesity, osteoporosis, and other health challenges. He also presents CFRI’s new programmatic efforts to raise expertise of caregivers for aging CF patients as well as providing accurate information and empowerment to all people with CF everywhere. This presentation was part of CFRI's 37th National CF Education Conference.

CFRI's 37th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Viatris, Gilead Sciences, AbbVie, and the Boomer Esiason Foundation.

]]> false No 3715 437 full Aging in the New Age of Cystic Fibrosis - Richard Moss, MD (Audio) Aging in the New Age of Cystic Fibrosis - Richard Moss, MD (Audio) https://cfri.podbean.com/e/dr-moss-audio/ https://cfri.podbean.com/e/dr-moss-audio/#comments Wed, 11 Sep 2024 10:41:35 -0700 cfri.podbean.com/b91b874a-e299-3623-84e0-4d16ba93dee0 Dr. Rick Moss, Professor Emeritus of Pediatrics at Stanford University and former Director of the Stanford CF Center, presents an overview of the challenges of aging in the modulator era of CF, such as diabetes, a variety of cancers, cardiovascular disease, obesity, osteoporosis, and other health challenges. He also presents CFRI’s new programmatic efforts to raise expertise of caregivers for aging CF patients as well as providing accurate information and empowerment to all people with CF everywhere. This presentation was part of CFRI's 37th National CF Education Conference.

CFRI's 37th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Viatris, Gilead Sciences, AbbVie, and the Boomer Esiason Foundation.

]]> Dr. Rick Moss, Professor Emeritus of Pediatrics at Stanford University and former Director of the Stanford CF Center, presents an overview of the challenges of aging in the modulator era of CF, such as diabetes, a variety of cancers, cardiovascular disease, obesity, osteoporosis, and other health challenges. He also presents CFRI’s new programmatic efforts to raise expertise of caregivers for aging CF patients as well as providing accurate information and empowerment to all people with CF everywhere. This presentation was part of CFRI's 37th National CF Education Conference.

CFRI's 37th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Viatris, Gilead Sciences, AbbVie, and the Boomer Esiason Foundation.

]]> false No 3715 436 full Modeling Epithelial Immune Cell Interactions in Cystic Fibrosis - Amy Ryan, PhD (video) Modeling Epithelial Immune Cell Interactions in Cystic Fibrosis - Amy Ryan, PhD (video) https://cfri.podbean.com/e/amy-ryan-video/ https://cfri.podbean.com/e/amy-ryan-video/#comments Wed, 04 Sep 2024 12:43:44 -0700 cfri.podbean.com/6161fd64-4ba8-325a-8d1c-52b28b7a5d4f Dr. Amy Ryan, Associate Professor of Anatomy and Cell Biology and Associate Director of the Center for Gene Therapy at the University of Iowa, highlights potential mechanisms underlying immune complications observed in CF patients despite modulator treatment. She discusses an integrated approach combining physics-based models, gene-edited immune cells, and lung-on-chip technologies, which holds promise for advancing personalized cellular therapies for CF. This presentation was part of CFRI's 37th National CF Education Conference.

CFRI's 37th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Viatris, Gilead Sciences, AbbVie, and the Boomer Esiason Foundation.

]]> Dr. Amy Ryan, Associate Professor of Anatomy and Cell Biology and Associate Director of the Center for Gene Therapy at the University of Iowa, highlights potential mechanisms underlying immune complications observed in CF patients despite modulator treatment. She discusses an integrated approach combining physics-based models, gene-edited immune cells, and lung-on-chip technologies, which holds promise for advancing personalized cellular therapies for CF. This presentation was part of CFRI's 37th National CF Education Conference.

CFRI's 37th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Viatris, Gilead Sciences, AbbVie, and the Boomer Esiason Foundation.

]]> false No 2442 435 full Modeling Epithelial Immune Cell Interactions in Cystic Fibrosis  - Amy Ryan, PhD (audio) Modeling Epithelial Immune Cell Interactions in Cystic Fibrosis  - Amy Ryan, PhD (audio) https://cfri.podbean.com/e/amy-ryan-audio/ https://cfri.podbean.com/e/amy-ryan-audio/#comments Wed, 04 Sep 2024 12:43:33 -0700 cfri.podbean.com/91f5a850-4995-3703-89bb-a58835813c8c Dr. Amy Ryan, Associate Professor of Anatomy and Cell Biology and Associate Director of the Center for Gene Therapy at the University of Iowa, highlights potential mechanisms underlying immune complications observed in CF patients despite modulator treatment. She discusses an integrated approach combining physics-based models, gene-edited immune cells, and lung-on-chip technologies, which holds promise for advancing personalized cellular therapies for CF. This presentation was part of CFRI's 37th National CF Education Conference.

CFRI's 37th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Viatris, Gilead Sciences, AbbVie, and the Boomer Esiason Foundation.

]]> Dr. Amy Ryan, Associate Professor of Anatomy and Cell Biology and Associate Director of the Center for Gene Therapy at the University of Iowa, highlights potential mechanisms underlying immune complications observed in CF patients despite modulator treatment. She discusses an integrated approach combining physics-based models, gene-edited immune cells, and lung-on-chip technologies, which holds promise for advancing personalized cellular therapies for CF. This presentation was part of CFRI's 37th National CF Education Conference.

CFRI's 37th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Viatris, Gilead Sciences, AbbVie, and the Boomer Esiason Foundation.

]]> false No 2442 434 full Exploring Nucleic Acid Based Approaches to Treat People with CF - Jennifer Taylor-Cousar, MD, MSCS (video) Exploring Nucleic Acid Based Approaches to Treat People with CF - Jennifer Taylor-Cousar, MD, MSCS (video) https://cfri.podbean.com/e/jennifer-taylor-cousar-video/ https://cfri.podbean.com/e/jennifer-taylor-cousar-video/#comments Wed, 04 Sep 2024 12:43:18 -0700 cfri.podbean.com/1da9eb70-23be-3f0d-8b19-c9a9e7d4a927 Dr. Jennifer Taylor-Cousar, a tenured professor of adult and pediatric pulmonary medicine and co-director of the Adult CF Program at National Jewish Health, gives a comprehensive overview of nucleic acid-based therapies (NABT), which aim to deliver the correct instructions to the cell for making a functional CFTR protein. She reviews lessons learned from historical NABT efforts, pre-clinical data supporting renewed clinical investigative efforts, and ongoing clinical trial designs and updates. This presentation was part of CFRI's 37th National CF Education Conference.

CFRI's 37th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Viatris, Gilead Sciences, AbbVie, and the Boomer Esiason Foundation.

]]> Dr. Jennifer Taylor-Cousar, a tenured professor of adult and pediatric pulmonary medicine and co-director of the Adult CF Program at National Jewish Health, gives a comprehensive overview of nucleic acid-based therapies (NABT), which aim to deliver the correct instructions to the cell for making a functional CFTR protein. She reviews lessons learned from historical NABT efforts, pre-clinical data supporting renewed clinical investigative efforts, and ongoing clinical trial designs and updates. This presentation was part of CFRI's 37th National CF Education Conference.

CFRI's 37th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Viatris, Gilead Sciences, AbbVie, and the Boomer Esiason Foundation.

]]> false No 2843 433 full Exploring Nucleic Acid Based Approaches to Treat People with CF - Jennifer Taylor-Cousar, MD, MSCS (audio) Exploring Nucleic Acid Based Approaches to Treat People with CF - Jennifer Taylor-Cousar, MD, MSCS (audio) https://cfri.podbean.com/e/jennifer-taylor-cousar-audio/ https://cfri.podbean.com/e/jennifer-taylor-cousar-audio/#comments Wed, 04 Sep 2024 12:43:01 -0700 cfri.podbean.com/10ac74f6-474e-3f8a-a9b4-a9b3b6556334 Dr. Jennifer Taylor-Cousar, a tenured professor of adult and pediatric pulmonary medicine and co-director of the Adult CF Program at National Jewish Health, gives a comprehensive overview of nucleic acid-based therapies (NABT), which aim to deliver the correct instructions to the cell for making a functional CFTR protein. She reviews lessons learned from historical NABT efforts, pre-clinical data supporting renewed clinical investigative efforts, and ongoing clinical trial designs and updates. This presentation was part of CFRI's 37th National CF Education Conference.

CFRI's 37th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Viatris, Gilead Sciences, AbbVie, and the Boomer Esiason Foundation.

]]> Dr. Jennifer Taylor-Cousar, a tenured professor of adult and pediatric pulmonary medicine and co-director of the Adult CF Program at National Jewish Health, gives a comprehensive overview of nucleic acid-based therapies (NABT), which aim to deliver the correct instructions to the cell for making a functional CFTR protein. She reviews lessons learned from historical NABT efforts, pre-clinical data supporting renewed clinical investigative efforts, and ongoing clinical trial designs and updates. This presentation was part of CFRI's 37th National CF Education Conference.

CFRI's 37th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Viatris, Gilead Sciences, AbbVie, and the Boomer Esiason Foundation.

]]> false No 2843 432 full Making Sense of GHPP and CCS - What Are the Benefits? - Lynne Kinst (Video) Making Sense of GHPP and CCS - What Are the Benefits? - Lynne Kinst (Video) https://cfri.podbean.com/e/lynne-kinst-video/ https://cfri.podbean.com/e/lynne-kinst-video/#comments Wed, 28 Aug 2024 11:25:31 -0700 cfri.podbean.com/cc6a6625-33b9-3088-951e-738a3f88cdb5 California has two programs that can help CF patients with health care access, but many don’t utilize this support because they are not aware of their eligibility and potential assistance. Lynne Kinst, Executive Director of the Hemophilia Council of California, provides an overview of California’s Genetically Handicapped Person’s Program (GHPP) which helps adult beneficiaries with their health care costs, and California Children's Services, which helps those under 21. Learn about eligibility, the application process and enrollee benefits.

CF Community Voices is made possible through support from Viatris, Vertex Pharmaceuticals, and Gilead Sciences.

]]> California has two programs that can help CF patients with health care access, but many don’t utilize this support because they are not aware of their eligibility and potential assistance. Lynne Kinst, Executive Director of the Hemophilia Council of California, provides an overview of California’s Genetically Handicapped Person’s Program (GHPP) which helps adult beneficiaries with their health care costs, and California Children's Services, which helps those under 21. Learn about eligibility, the application process and enrollee benefits.

CF Community Voices is made possible through support from Viatris, Vertex Pharmaceuticals, and Gilead Sciences.

]]> false No 2806 431 full Making Sense of GHPP and CCS - What Are the Benefits? - Lynne Kinst (Audio) Making Sense of GHPP and CCS - What Are the Benefits? - Lynne Kinst (Audio) https://cfri.podbean.com/e/lynne-kinst-audio/ https://cfri.podbean.com/e/lynne-kinst-audio/#comments Wed, 28 Aug 2024 11:25:16 -0700 cfri.podbean.com/a52a6afb-ab4a-38e6-ba26-413c1c4d5012 California has two programs that can help CF patients with health care access, but many don’t utilize this support because they are not aware of their eligibility and potential assistance. Lynne Kinst, Executive Director of the Hemophilia Council of California, provides an overview of California’s Genetically Handicapped Person’s Program (GHPP) which helps adult beneficiaries with their health care costs, and California Children's Services, which helps those under 21. Learn about eligibility, the application process and enrollee benefits.

CF Community Voices is made possible through support from Viatris, Vertex Pharmaceuticals, and Gilead Sciences.

]]> California has two programs that can help CF patients with health care access, but many don’t utilize this support because they are not aware of their eligibility and potential assistance. Lynne Kinst, Executive Director of the Hemophilia Council of California, provides an overview of California’s Genetically Handicapped Person’s Program (GHPP) which helps adult beneficiaries with their health care costs, and California Children's Services, which helps those under 21. Learn about eligibility, the application process and enrollee benefits.

CF Community Voices is made possible through support from Viatris, Vertex Pharmaceuticals, and Gilead Sciences.

]]> false No 2806 430 full All That Really Matters: A Conversation & Book Reading with Dr. David Weill (Video) All That Really Matters: A Conversation & Book Reading with Dr. David Weill (Video) https://cfri.podbean.com/e/dr-weill-video-1723666079/ https://cfri.podbean.com/e/dr-weill-video-1723666079/#comments Wed, 14 Aug 2024 13:07:59 -0700 cfri.podbean.com/8a0234f8-2b6a-3628-9d89-970bb8764c6f In this podcast, David Weill, MD, discusses his newest – and first fictional – book, All That Really Matters, in which transplant plays a central theme. Dr. Weill spent over 20 years as a transplant physician, including as Director of Stanford’s Center for Advanced Lung Disease and the Lung Transplant Program. In addition to sharing a reading from his novel, Dr. Weill discusses real life issues that are central themes of the novel, including unethical hospital practices that determine patients’ placement on the transplant wait list, and the need for more transparency in the allocation system for transplanted organs.

More information about Dr. Weill and his books may be found at www.davidweill.com.

CF Community Voices is made possible through support from Viatris, Vertex Pharmaceuticals, and Gilead Sciences.

]]> In this podcast, David Weill, MD, discusses his newest – and first fictional – book, All That Really Matters, in which transplant plays a central theme. Dr. Weill spent over 20 years as a transplant physician, including as Director of Stanford’s Center for Advanced Lung Disease and the Lung Transplant Program. In addition to sharing a reading from his novel, Dr. Weill discusses real life issues that are central themes of the novel, including unethical hospital practices that determine patients’ placement on the transplant wait list, and the need for more transparency in the allocation system for transplanted organs.

More information about Dr. Weill and his books may be found at www.davidweill.com.

CF Community Voices is made possible through support from Viatris, Vertex Pharmaceuticals, and Gilead Sciences.

]]> false No 1644 429 full All That Really Matters: A Conversation & Book Reading with Dr. David Weill (Audio) All That Really Matters: A Conversation & Book Reading with Dr. David Weill (Audio) https://cfri.podbean.com/e/dr-weill-audio-1723666030/ https://cfri.podbean.com/e/dr-weill-audio-1723666030/#comments Wed, 14 Aug 2024 13:07:10 -0700 cfri.podbean.com/1ac6a439-6b1a-3c11-a498-18669446fa2e In this podcast, David Weill, MD, discusses his newest – and first fictional – book, All That Really Matters, in which transplant plays a central theme. Dr. Weill spent over 20 years as a transplant physician, including as Director of Stanford’s Center for Advanced Lung Disease and the Lung Transplant Program. In addition to sharing a reading from his novel, Dr. Weill discusses real life issues that are central themes of the novel, including unethical hospital practices that determine patients’ placement on the transplant wait list, and the need for more transparency in the allocation system for transplanted organs.

More information about Dr. Weill and his books may be found at www.davidweill.com.

CF Community Voices is made possible through support from Viatris, Vertex Pharmaceuticals, and Gilead Sciences.

]]> In this podcast, David Weill, MD, discusses his newest – and first fictional – book, All That Really Matters, in which transplant plays a central theme. Dr. Weill spent over 20 years as a transplant physician, including as Director of Stanford’s Center for Advanced Lung Disease and the Lung Transplant Program. In addition to sharing a reading from his novel, Dr. Weill discusses real life issues that are central themes of the novel, including unethical hospital practices that determine patients’ placement on the transplant wait list, and the need for more transparency in the allocation system for transplanted organs.

More information about Dr. Weill and his books may be found at www.davidweill.com.

CF Community Voices is made possible through support from Viatris, Vertex Pharmaceuticals, and Gilead Sciences.

]]> false No 1644 428 full Demystifying the Colonoscopy Process - Jeffrey King, MD (Video) Demystifying the Colonoscopy Process - Jeffrey King, MD (Video) https://cfri.podbean.com/e/dr-king-video/ https://cfri.podbean.com/e/dr-king-video/#comments Wed, 14 Aug 2024 12:40:10 -0700 cfri.podbean.com/bd8200fd-4667-3711-bc9b-9f1b356f852d Colonoscopy screenings are the #1 way to prevent colon cancer. In this recorded webinar, join Jeffrey King, MD, gastroenterologist at National Jewish Health, for a candid conversation about how to prepare for a successful colonoscopy as someone with CF, and what to expect during the procedure. By demystifying the colonoscopy process, it is hoped that more members of the CF community will schedule this potentially life-saving screening.

CF Community Voices is made possible to date through support from Viatris, Vertex Pharmaceuticals, and Gilead Sciences.

]]> Colonoscopy screenings are the #1 way to prevent colon cancer. In this recorded webinar, join Jeffrey King, MD, gastroenterologist at National Jewish Health, for a candid conversation about how to prepare for a successful colonoscopy as someone with CF, and what to expect during the procedure. By demystifying the colonoscopy process, it is hoped that more members of the CF community will schedule this potentially life-saving screening.

CF Community Voices is made possible to date through support from Viatris, Vertex Pharmaceuticals, and Gilead Sciences.

]]> false No 3540 427 full Demystifying the Colonoscopy Process - Jeffrey King, MD (Audio) Demystifying the Colonoscopy Process - Jeffrey King, MD (Audio) https://cfri.podbean.com/e/dr-king-audio/ https://cfri.podbean.com/e/dr-king-audio/#comments Wed, 14 Aug 2024 12:39:54 -0700 cfri.podbean.com/4160f052-dca2-357e-aa17-5500a7da3eb3 Colonoscopy screenings are the #1 way to prevent colon cancer. In this recorded webinar, join Jeffrey King, MD, gastroenterologist at National Jewish Health, for a candid conversation about how to prepare for a successful colonoscopy as someone with CF, and what to expect during the procedure. By demystifying the colonoscopy process, it is hoped that more members of the CF community will schedule this potentially life-saving screening.

CF Community Voices is made possible to date through support from Viatris, Vertex Pharmaceuticals, and Gilead Sciences.

]]> Colonoscopy screenings are the #1 way to prevent colon cancer. In this recorded webinar, join Jeffrey King, MD, gastroenterologist at National Jewish Health, for a candid conversation about how to prepare for a successful colonoscopy as someone with CF, and what to expect during the procedure. By demystifying the colonoscopy process, it is hoped that more members of the CF community will schedule this potentially life-saving screening.

CF Community Voices is made possible to date through support from Viatris, Vertex Pharmaceuticals, and Gilead Sciences.

]]> false No 3540 426 full Stretch Your Budget: What To Make With What You Have - Maggie Williamson (Video) Stretch Your Budget: What To Make With What You Have - Maggie Williamson (Video) https://cfri.podbean.com/e/maggie-williamson-video/ https://cfri.podbean.com/e/maggie-williamson-video/#comments Tue, 09 Jul 2024 13:31:53 -0700 cfri.podbean.com/e70a120b-4901-3a62-8e47-af1250823047 In this third podcast of our Stretch Your Budget series, join Maggie Williamson, a professional chef living with cystic fibrosis post-transplant, to learn tips on what to shop for and how to stretch $20 to create several days’ worth of meals. Maggie provides a base recipe for ‘batch cooking’ (see link below) to make large quantity and versatile meals for less. Maggie also shares ways to use food before it ends up in the trash so as to reduce waste and stretch your cash. Following Maggie's tips, cooking and cleanup can be less expensive, while saving time and precious energy.

‘Batch Cooking Bolognese’ recipe available for you here: http://www.cfri.org/wp-content/uploads/2024/07/Bolognese-Recipe_MW.pdf

Recommended Items to have on hand:

CANNED/DRIED: tomatoes, beans, rice, fish (tuna, salmon, sardines, crab).

SPICES: garlic, onion, Italian seasoning, cumin, oregano, chili flakes, fennel seeds.

SAUCE: soy (or GF tamari), hot sauce, vinegars (red or white wine, apple cider, olive oil, or vegetable or coconut.

FROZEN: vegetables, fruits.

STOCK: chicken or Better Than Bouillon.

CFRI’s 2024 CF Community Voices is made possible through support from Viatris, Vertex Pharmaceuticals, and Gilead Sciences.

#Bolognese #Recipe #Cooking #CookingonaBudget

]]> In this third podcast of our Stretch Your Budget series, join Maggie Williamson, a professional chef living with cystic fibrosis post-transplant, to learn tips on what to shop for and how to stretch $20 to create several days’ worth of meals. Maggie provides a base recipe for ‘batch cooking’ (see link below) to make large quantity and versatile meals for less. Maggie also shares ways to use food before it ends up in the trash so as to reduce waste and stretch your cash. Following Maggie's tips, cooking and cleanup can be less expensive, while saving time and precious energy.

‘Batch Cooking Bolognese’ recipe available for you here: http://www.cfri.org/wp-content/uploads/2024/07/Bolognese-Recipe_MW.pdf

Recommended Items to have on hand:

CANNED/DRIED: tomatoes, beans, rice, fish (tuna, salmon, sardines, crab).

SPICES: garlic, onion, Italian seasoning, cumin, oregano, chili flakes, fennel seeds.

SAUCE: soy (or GF tamari), hot sauce, vinegars (red or white wine, apple cider, olive oil, or vegetable or coconut.

FROZEN: vegetables, fruits.

STOCK: chicken or Better Than Bouillon.

CFRI’s 2024 CF Community Voices is made possible through support from Viatris, Vertex Pharmaceuticals, and Gilead Sciences.

#Bolognese #Recipe #Cooking #CookingonaBudget

]]> false No 1805 425 full Stretch Your Budget: What To Make With What You Have - Maggie Williamson (Audio) Stretch Your Budget: What To Make With What You Have - Maggie Williamson (Audio) https://cfri.podbean.com/e/maggie-williamson-audio/ https://cfri.podbean.com/e/maggie-williamson-audio/#comments Tue, 09 Jul 2024 12:05:50 -0700 cfri.podbean.com/247880ed-6b54-328b-872e-bfdef9f9364b In this third podcast of our Stretch Your Budget series, join Maggie Williamson, a professional chef living with cystic fibrosis post-transplant, to learn tips on what to shop for and how to stretch $20 to create several days’ worth of meals. Maggie provides a base recipe for ‘batch cooking’ (see link below) to make large quantity and versatile meals for less. Maggie also shares ways to use food before it ends up in the trash so as to reduce waste and stretch your cash. Following Maggie's tips, cooking and cleanup can be less expensive, while saving time and precious energy.

‘Batch Cooking Bolognese’ recipe available for you here: http://www.cfri.org/wp-content/uploads/2024/07/Bolognese-Recipe_MW.pdf

Recommended Items to have on hand:

CANNED/DRIED: tomatoes, beans, rice, fish (tuna, salmon, sardines, crab).

SPICES: garlic, onion, Italian seasoning, cumin, oregano, chili flakes, fennel seeds.

SAUCE: soy (or GF tamari), hot sauce, vinegars (red or white wine, apple cider, olive oil, or vegetable or coconut.

FROZEN: vegetables, fruits.

STOCK: chicken or Better Than Bouillon.

CFRI’s 2024 CF Community Voices is made possible through support from Viatris, Vertex Pharmaceuticals, and Gilead Sciences.

#Bolognese #Recipe #Cooking #CookingonaBudget

]]> In this third podcast of our Stretch Your Budget series, join Maggie Williamson, a professional chef living with cystic fibrosis post-transplant, to learn tips on what to shop for and how to stretch $20 to create several days’ worth of meals. Maggie provides a base recipe for ‘batch cooking’ (see link below) to make large quantity and versatile meals for less. Maggie also shares ways to use food before it ends up in the trash so as to reduce waste and stretch your cash. Following Maggie's tips, cooking and cleanup can be less expensive, while saving time and precious energy.

‘Batch Cooking Bolognese’ recipe available for you here: http://www.cfri.org/wp-content/uploads/2024/07/Bolognese-Recipe_MW.pdf

Recommended Items to have on hand:

CANNED/DRIED: tomatoes, beans, rice, fish (tuna, salmon, sardines, crab).

SPICES: garlic, onion, Italian seasoning, cumin, oregano, chili flakes, fennel seeds.

SAUCE: soy (or GF tamari), hot sauce, vinegars (red or white wine, apple cider, olive oil, or vegetable or coconut.

FROZEN: vegetables, fruits.

STOCK: chicken or Better Than Bouillon.

CFRI’s 2024 CF Community Voices is made possible through support from Viatris, Vertex Pharmaceuticals, and Gilead Sciences.

#Bolognese #Recipe #Cooking #CookingonaBudget

]]> false No 1806 424 full How To Plan For the Future On Limited Resources - Arek Puzia, MBA (Video) How To Plan For the Future On Limited Resources - Arek Puzia, MBA (Video) https://cfri.podbean.com/e/arek-puzia-video/ https://cfri.podbean.com/e/arek-puzia-video/#comments Wed, 26 Jun 2024 11:16:00 -0700 cfri.podbean.com/f2c3e017-4261-320a-bbc8-2d73bc73c2a4 In this podcast, Arek Puzia, CPA, CFP, and the father of a daughter with cystic fibrosis, provides information on planning for the future when resources are very limited. Learn what to consider in growing your assets with a low cost and well diversified portfolio, company 401K plans, and first-time home ownership programs. Also, Arek shares some tips on lowering the cost of living with some cost savings hacks, and where to find resources that may be able to help with the high cost of living with cystic fibrosis.

CFRI has an extensive resource list available on its website. Go to https://www.cfri.org/education-support/cf-patient-assistance-resources/ to review and/or download a copy.

CFRI’s 2024 CF Community Voices is made possible through support from Viatris, Vertex Pharmaceuticals, and Gilead Sciences.

]]> In this podcast, Arek Puzia, CPA, CFP, and the father of a daughter with cystic fibrosis, provides information on planning for the future when resources are very limited. Learn what to consider in growing your assets with a low cost and well diversified portfolio, company 401K plans, and first-time home ownership programs. Also, Arek shares some tips on lowering the cost of living with some cost savings hacks, and where to find resources that may be able to help with the high cost of living with cystic fibrosis.

CFRI has an extensive resource list available on its website. Go to https://www.cfri.org/education-support/cf-patient-assistance-resources/ to review and/or download a copy.

CFRI’s 2024 CF Community Voices is made possible through support from Viatris, Vertex Pharmaceuticals, and Gilead Sciences.

]]> false No 1275 423 full How To Plan For the Future On Limited Resources - Arek Puzia, MBA (Audio) How To Plan For the Future On Limited Resources - Arek Puzia, MBA (Audio) https://cfri.podbean.com/e/arek-puzia-audio/ https://cfri.podbean.com/e/arek-puzia-audio/#comments Wed, 26 Jun 2024 11:15:45 -0700 cfri.podbean.com/4437a977-40b9-30a9-9743-55f270ad3bde In this podcast, Arek Puzia, CPA, CFP, and the father of a daughter with cystic fibrosis, provides information on planning for the future when resources are very limited. Learn what to consider in growing your assets with a low cost and well diversified portfolio, company 401K plans, and first-time home ownership programs. Also, Arek shares some tips on lowering the cost of living with some cost savings hacks, and where to find resources that may be able to help with the high cost of living with cystic fibrosis.

CFRI has an extensive resource list available on its website. Go to https://www.cfri.org/education-support/cf-patient-assistance-resources/ to review and/or download a copy.

CFRI’s 2024 CF Community Voices is made possible through support from Viatris, Vertex Pharmaceuticals, and Gilead Sciences.

]]> In this podcast, Arek Puzia, CPA, CFP, and the father of a daughter with cystic fibrosis, provides information on planning for the future when resources are very limited. Learn what to consider in growing your assets with a low cost and well diversified portfolio, company 401K plans, and first-time home ownership programs. Also, Arek shares some tips on lowering the cost of living with some cost savings hacks, and where to find resources that may be able to help with the high cost of living with cystic fibrosis.

CFRI has an extensive resource list available on its website. Go to https://www.cfri.org/education-support/cf-patient-assistance-resources/ to review and/or download a copy.

CFRI’s 2024 CF Community Voices is made possible through support from Viatris, Vertex Pharmaceuticals, and Gilead Sciences.

]]> false No 1276 422 full Stretch Your Budget: CF Food Expenses – A Panel Discussion (Video) Stretch Your Budget: CF Food Expenses – A Panel Discussion (Video) https://cfri.podbean.com/e/budget-panel-eating-video/ https://cfri.podbean.com/e/budget-panel-eating-video/#comments Wed, 26 Jun 2024 11:06:11 -0700 cfri.podbean.com/33cb9351-35b2-3294-bdcf-b3da38c790c3 The hardships of eating on a restricted budget are widespread, and food insecurity is three times higher within the cystic fibrosis community than the national average. Join Arek Puzia, CPA, CFP, father of a child with CF, Tiffany Raffino, LCSW, MSW, from UCSF, and Georgia Brown, advocate and an adult with CF, for a panel discussion on strategies to cope with increased food costs. Learn tips to ease the burden of grocery expenses and food prep, while creating nutritious meals for you or your family.

CFRI’s 2024 CF Community Voices is made possible through support from Viatris, Vertex Pharmaceuticals, and Gilead Sciences.

]]> The hardships of eating on a restricted budget are widespread, and food insecurity is three times higher within the cystic fibrosis community than the national average. Join Arek Puzia, CPA, CFP, father of a child with CF, Tiffany Raffino, LCSW, MSW, from UCSF, and Georgia Brown, advocate and an adult with CF, for a panel discussion on strategies to cope with increased food costs. Learn tips to ease the burden of grocery expenses and food prep, while creating nutritious meals for you or your family.

CFRI’s 2024 CF Community Voices is made possible through support from Viatris, Vertex Pharmaceuticals, and Gilead Sciences.

]]> false No 2267 421 full Stretch Your Budget: CF Food Expenses – A Panel Discussion (Audio) Stretch Your Budget: CF Food Expenses – A Panel Discussion (Audio) https://cfri.podbean.com/e/budget-panel-eating-audio/ https://cfri.podbean.com/e/budget-panel-eating-audio/#comments Wed, 26 Jun 2024 11:05:53 -0700 cfri.podbean.com/bf77d681-9127-3fea-9fde-eb95fc348e72 The hardships of eating on a restricted budget are widespread, and food insecurity is three times higher within the cystic fibrosis community than the national average. Join Arek Puzia, CPA, CFP, father of a child with CF, Tiffany Raffino, LCSW, MSW, from UCSF, and Georgia Brown, advocate and an adult with CF, for a panel discussion on strategies to cope with increased food costs. Learn tips to ease the burden of grocery expenses and food prep, while creating nutritious meals for you or your family.

CFRI’s 2024 CF Community Voices is made possible through support from Viatris, Vertex Pharmaceuticals, and Gilead Sciences.

]]> The hardships of eating on a restricted budget are widespread, and food insecurity is three times higher within the cystic fibrosis community than the national average. Join Arek Puzia, CPA, CFP, father of a child with CF, Tiffany Raffino, LCSW, MSW, from UCSF, and Georgia Brown, advocate and an adult with CF, for a panel discussion on strategies to cope with increased food costs. Learn tips to ease the burden of grocery expenses and food prep, while creating nutritious meals for you or your family.

CFRI’s 2024 CF Community Voices is made possible through support from Viatris, Vertex Pharmaceuticals, and Gilead Sciences.

]]> false No 2267 420 full Stretch Your Budget: CF Living Expense – Resources (Video) Stretch Your Budget: CF Living Expense – Resources (Video) https://cfri.podbean.com/e/budget-resources-video/ https://cfri.podbean.com/e/budget-resources-video/#comments Tue, 25 Jun 2024 12:08:07 -0700 cfri.podbean.com/dbba3405-aae0-3b4c-810b-095daa8c6d61 In this second podcast in our Stretch Your Budget series, Tiffany Raffino, LCSW, MSW, CF Social Worker at UCSF, connects families impacted by cystic fibrosis with resources to help ease financial burdens and elevate quality of life. Tiffany addresses health insurance, medication assistance, financial assistance, transportation, caregiving support, peer support, recreational activities and wish-granting organizations. Tiffany recognizes the multi-faceted challenges faced by children and adults with cystic fibrosis (CF) and their families to manage treatments, cope with stress, and balance health care with school and/or work life, and provides valuable tools to address them.

Tiffany was chosen by Cystic Fibrosis Research Institute as its 2019 CF Champion.

CFRI’s 2024 CF Community Voices is made possible through support from Viatris, Vertex Pharmaceuticals, and Gilead Sciences.

]]> In this second podcast in our Stretch Your Budget series, Tiffany Raffino, LCSW, MSW, CF Social Worker at UCSF, connects families impacted by cystic fibrosis with resources to help ease financial burdens and elevate quality of life. Tiffany addresses health insurance, medication assistance, financial assistance, transportation, caregiving support, peer support, recreational activities and wish-granting organizations. Tiffany recognizes the multi-faceted challenges faced by children and adults with cystic fibrosis (CF) and their families to manage treatments, cope with stress, and balance health care with school and/or work life, and provides valuable tools to address them.

Tiffany was chosen by Cystic Fibrosis Research Institute as its 2019 CF Champion.

CFRI’s 2024 CF Community Voices is made possible through support from Viatris, Vertex Pharmaceuticals, and Gilead Sciences.

]]> false No 1406 419 full Stretch Your Budget: CF Living Expense – Resources (Audio) Stretch Your Budget: CF Living Expense – Resources (Audio) https://cfri.podbean.com/e/budget-resources-audio/ https://cfri.podbean.com/e/budget-resources-audio/#comments Tue, 25 Jun 2024 12:07:48 -0700 cfri.podbean.com/a477b7be-564e-30eb-be80-bbdc2fe03de2 In this second podcast in our Stretch Your Budget series, Tiffany Raffino, LCSW, MSW, CF Social Worker at UCSF, connects families impacted by cystic fibrosis with resources to help ease financial burdens and elevate quality of life. Tiffany addresses health insurance, medication assistance, financial assistance, transportation, caregiving support, peer support, recreational activities and wish-granting organizations. Tiffany recognizes the multi-faceted challenges faced by children and adults with cystic fibrosis (CF) and their families to manage treatments, cope with stress, and balance health care with school and/or work life, and provides valuable tools to address them.

Tiffany was chosen by Cystic Fibrosis Research Institute as its 2019 CF Champion.

CFRI’s 2024 CF Community Voices is made possible through support from Viatris, Vertex Pharmaceuticals, and Gilead Sciences.

]]> In this second podcast in our Stretch Your Budget series, Tiffany Raffino, LCSW, MSW, CF Social Worker at UCSF, connects families impacted by cystic fibrosis with resources to help ease financial burdens and elevate quality of life. Tiffany addresses health insurance, medication assistance, financial assistance, transportation, caregiving support, peer support, recreational activities and wish-granting organizations. Tiffany recognizes the multi-faceted challenges faced by children and adults with cystic fibrosis (CF) and their families to manage treatments, cope with stress, and balance health care with school and/or work life, and provides valuable tools to address them.

Tiffany was chosen by Cystic Fibrosis Research Institute as its 2019 CF Champion.

CFRI’s 2024 CF Community Voices is made possible through support from Viatris, Vertex Pharmaceuticals, and Gilead Sciences.

]]> false No 1406 418 full Unleashed Stories: CF Pet Perspectives (Video) Unleashed Stories: CF Pet Perspectives (Video) https://cfri.podbean.com/e/pets-podcast-video-1714452255/ https://cfri.podbean.com/e/pets-podcast-video-1714452255/#comments Mon, 29 Apr 2024 21:44:15 -0700 cfri.podbean.com/aed16b53-3bd1-3a7a-a327-0e22b0768b9b In this podcast, you’ll meet the pets that make a big difference in the lives of adults living with cystic fibrosis and hear stories of how these furry friends provide unconditional love, support, and acceptance. The CDC acknowledges that the bond between people and their pets can increase fitness, lower stress, and bring happiness to their owners. CFRI warmly thanks Crystal Collier, Elyse Elconin Goldberg, Anna Payne, Missy Peterson, and Maggie Williamson for their participation.

CFRI’s 2024 CF Community Voices is made possible to date through support from Viatris, Vertex Pharmaceuticals, and Gilead Sciences.

]]> In this podcast, you’ll meet the pets that make a big difference in the lives of adults living with cystic fibrosis and hear stories of how these furry friends provide unconditional love, support, and acceptance. The CDC acknowledges that the bond between people and their pets can increase fitness, lower stress, and bring happiness to their owners. CFRI warmly thanks Crystal Collier, Elyse Elconin Goldberg, Anna Payne, Missy Peterson, and Maggie Williamson for their participation.

CFRI’s 2024 CF Community Voices is made possible to date through support from Viatris, Vertex Pharmaceuticals, and Gilead Sciences.

]]> false No 847 417 full Unleashed Stories: CF Pet Perspectives (Audio) Unleashed Stories: CF Pet Perspectives (Audio) https://cfri.podbean.com/e/pets-podcast-audio-1714452239/ https://cfri.podbean.com/e/pets-podcast-audio-1714452239/#comments Mon, 29 Apr 2024 21:43:59 -0700 cfri.podbean.com/cceeedbd-482f-39ef-bca5-d780adbb3532 In this podcast, you’ll meet the pets that make a big difference in the lives of adults living with cystic fibrosis and hear stories of how these furry friends provide unconditional love, support, and acceptance. The CDC acknowledges that the bond between people and their pets can increase fitness, lower stress, and bring happiness to their owners. CFRI warmly thanks Crystal Collier, Elyse Elconin Goldberg, Anna Payne, Missy Peterson, and Maggie Williamson for their participation.

CFRI’s 2024 CF Community Voices is made possible to date through support from Viatris, Vertex Pharmaceuticals, and Gilead Sciences.

]]> In this podcast, you’ll meet the pets that make a big difference in the lives of adults living with cystic fibrosis and hear stories of how these furry friends provide unconditional love, support, and acceptance. The CDC acknowledges that the bond between people and their pets can increase fitness, lower stress, and bring happiness to their owners. CFRI warmly thanks Crystal Collier, Elyse Elconin Goldberg, Anna Payne, Missy Peterson, and Maggie Williamson for their participation.

CFRI’s 2024 CF Community Voices is made possible to date through support from Viatris, Vertex Pharmaceuticals, and Gilead Sciences.

]]> false No 847 416 full Colon Cancer and CF: Panel (Video) Colon Cancer and CF: Panel (Video) https://cfri.podbean.com/e/colon-cancer-panel-video/ https://cfri.podbean.com/e/colon-cancer-panel-video/#comments Tue, 26 Mar 2024 23:13:48 -0700 cfri.podbean.com/97bddae0-ebd4-3e29-9d27-09089a0f0a6b People with cystic fibrosis have 5-10 times the risk of developing colon cancer (25-30 times the risk post-transplant). Learn about the connection between colon cancer and CF, and the vital importance of early screening in this recorded webinar.

CFRI Executive Director, Siri Vaeth, was joined by community members Anna Payne, Thomas Horal, and Elyse Elconin-Goldberg, adults with CF who shared their personal experiences with colon cancer screening, prevention and diagnosis.

]]> People with cystic fibrosis have 5-10 times the risk of developing colon cancer (25-30 times the risk post-transplant). Learn about the connection between colon cancer and CF, and the vital importance of early screening in this recorded webinar.

CFRI Executive Director, Siri Vaeth, was joined by community members Anna Payne, Thomas Horal, and Elyse Elconin-Goldberg, adults with CF who shared their personal experiences with colon cancer screening, prevention and diagnosis.

]]> false No 3226 415 full Colon Cancer and CF: Panel (Audio) Colon Cancer and CF: Panel (Audio) https://cfri.podbean.com/e/colon-cancer-panel-audio/ https://cfri.podbean.com/e/colon-cancer-panel-audio/#comments Tue, 26 Mar 2024 23:13:32 -0700 cfri.podbean.com/129455e9-c9ee-32e3-be19-663b655722e0 People with cystic fibrosis have 5-10 times the risk of developing colon cancer (25-30 times the risk post-transplant). Learn about the connection between colon cancer and CF, and the vital importance of early screening in this recorded webinar.

CFRI Executive Director, Siri Vaeth, was joined by community members Anna Payne, Thomas Horal, and Elyse Elconin-Goldberg, adults with CF who shared their personal experiences with colon cancer screening, prevention and diagnosis.

]]> People with cystic fibrosis have 5-10 times the risk of developing colon cancer (25-30 times the risk post-transplant). Learn about the connection between colon cancer and CF, and the vital importance of early screening in this recorded webinar.

CFRI Executive Director, Siri Vaeth, was joined by community members Anna Payne, Thomas Horal, and Elyse Elconin-Goldberg, adults with CF who shared their personal experiences with colon cancer screening, prevention and diagnosis.

]]> false No 3226 414 full